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!
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 SurgeryDuration 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
Long night, little rest. Monling wakes up all the from my trips to the toilet and has decided to take a sleeping pill. I wake up at 06:30am and can’t sleep anymore but still decide to stay in bed. Headache. The sun is shining, the cat settles on the pillow and my iPod Touch is helping me to relax. Nice and warm. I get up at 9:00am, feed the cats, prepare my medication and have breakfast with a nice large cappuccino (Illy 100% Arabica). Good for the headache. Aspirine as well.
We’ve started thinking about a new place to live last week although our house is actually ideal in many ways: conveniently located near shops (15 minutes on foot), highway (5 minutes by car), the centre of Amsterdam (20 minutes by bike) and public transport (5 minutes on foot). Living left and right from us do we have very kind, understanding and helpful neighbours, they are about our age. We live along a rather busy street (Dutch standards) but opposite from a park with a great lake. And last but not least there are a massive sports centre and a swimming pool on the other side of the lake (15 minutes by bike) to burn those calories.
Our house is also what we’ve always wanted to have. It is spacious, it is bright, has good environmental parameters, it is low maintenance, has modern architecture and we turned a respectable part of it into a great functional office (almost large enough to put a full size pool table). We’re very pleased with our house.
“So why consider moving?” I can hear you think. Good question! There are a few reasons, some more important and relevant than the others. Very important is that we would like to live in an apartment rather than a house to avoid having to walk stairs (I assume that my right leg will at least not become better than it is now). Also important is that we have the impression that this neighbourhood is perhaps not developing itself in our best interests. Then there is our (my?) dream to still live a few years in Asia (Taiwan, Japan) or at least in the centre of a city like Amsterdam and with my life expectancy we better do something soon or forget all about it.
So this morning I queried the Internet for construction projects for new apartments in the area of Amsterdam, preferably the “Nieuwmarktbuurt” (centre and the place of China Town). I was not very successful so I extended the search area to Haarlem (a very nice “town” with an old centre with lots of restaurants). My first conclusion is that either nothing is (becomes) available or the prices are 4x of what we have now. I’ll keep you posted.
This afternoon we went cycling for the first time in weeks. With my new basketball shoes, my new sweater and my new cap. The shoes give me a lot of support and I was able to do about 75% of the lake before I got tired and my foot started flopping around. We didn’t stop though, we went for the full lake. Putting on these basketball shoes is a pain in the neck. I have to undo some of the shoelaces and then still I can barely manage to put them on. For sure I need a shoehorn. It was a great trip though and a big confidence builder!
The attached foto was made today in the “office”. I look fat because I have become very fat. I’m not proud of it. The Dexamethasone is making my face swell like a football and the eating frenzy it gives me is not helping very much. No matter how often I go to the toilet: this is the sad result. Bear with me.
I again didn’t sleep very well last night but this time I also woke up early (6:30am). Sheesh! While staying in bed did I try to type an e-mail using my iPod Touch but the lack of a proper keyboard in combination with the horizontal position was too much of a challenge. I got up, fed the cats, made breakfast and went downstairs to the office. I was very motivated to continue with the Salesforce budget module and especially the reporting module. I love it when you’re able to see patterns emerge when running a report on life data. But spanners were thrown in my works, I became annoyed for all the bad reasons: good mood gone. I hate it when that happens. Waste of precious time.
Super Nurse called with an update. She had spoken with the Neurosurgeon and they had agreed that the headache must become less before I can be allowed to reduce the Dexamethasone. I told her about yesterday’s seizure and she told me that we handled it properly. My hand still feels weird but apparently a seizure may be like a powerful electrical shock that can have a paralyzing effect on muscles for a number of days. We agreed that a Dexamethasone reduction was out of the question, especially as also the headache has not become less. To be continued.
This afternoon a colleague came to visit me to help me with the following interesting scenario. To me it is evident that there is a reasonable chance that I will not reach my pension date alive but I do not expect to not make it through surgery. Nobody can predict which way I will come out of surgery and how much time I still may have left. We’ll have to wait for the verdict of the Neurosurgeon.
But I consider it important to prepare for my future (or at least my wife’s), to have control over my life. Actually, if you allow me to be very honest: the lack of carreer end that I hoped to have forces me to find ways to evaluate my personal success or failure in a different way. The scenario analysis is to demonstrate (or not) that all life that I have left in me can be enjoyed in a sufficiently relaxed way (financially) by both my wife and me and that my wife has no (financial) problems beyond that point. It is too early to tell what it is going to be but I feel somewhat relaxed about the initial outcome. The real number crunching still has to come. Thanks for your help Eric-Jan!
Super Nurse just called. She asked how I was doing and referred to my voice mail. She had spoken with the Neuro-Surgeon and they agreed that in case the headache would have become less (disappear) that I can reduce the Dexamethasone. That is however not the case. To minimise the side effects of the Dexamethasone (without knowing I have several: thick feet, desire to eat more, feeling tense and hyper) she gave some advise on how to counter them:
Put my feet up in bed
Take the Dexamethason around 18:00
Don’t drink tea and coffee in the evening but warm milk (forms a protective layer in your stomach)
Don’t eat too much
Take up to 6 paracetamol per day against the headaches
I asked her for an additional CT scan but it seems that makes no sense. The CT scan will not reveal anything in more detail as long as the edema is there. She understood my concern about the grade 3 Glioma but explained that although a grade 3 grows faster than a grade 2 it will not be an explosive growth. She will contact me again on Thursday the 3rd of April to discuss my situation. If the headaches have become worse or I have started to throw up (especially during the night) I have to call the hospital immediately.
I have decided to now start regularly take two (harmless) homeopathic drugs my mother suggested me to use:
Cinnabaris (D6) which helps very well against Sinusitis to avoid confusing the headache caused by the edema
Zincum Valerianicum (D6) which helps to calm down a bit
My friend Marcus invited me a few weeks ago to join him, his wife and some other friends to see the new show of a Dutch theatre group called Carver. I have been invited several times before and it is always great fun. The title of this show was “Gods waiting room”, it is about dementia and I was looking forward to it.
However, I had a bit of bad night last night with throbbing headaches (related to the edema I guess) and pain in my stomach (the Dexamethasone in combination with Keppra prove too much for the Pantozol). I woke up with a sock in my mouth. I didn’t feel like seeing the show. What a shame. Because as you can see on the You Tube video must it have been quite marvellous (sorry for the confusing music, you best put the Sonific player on mute for the duration of the You Tube video). I have decided to take a sleeping pill tonight. And later decided against it.
This morning, as agreed, the Neuro-Oncology Nurse called me to inform me that the Neuro-Surgeon was called away for emergency surgery in another hospital and that therefore no meeting had taken place. She confirmed that I was on the list of cases to be discussed tomorrow.
I informed her about what happened last Friday (Seizure II) and we discussed this. She seemed considerably concerned about the increase of Keppra and even more about the Dexamethasone. I also told her about my right arm, the fact that my leg had become a bit better and speech had not improved. I also told her that according to the First Aid Neurologist there was a chance that my Glioma had turned into a (partial) grade 3. She didn’t react to that but told me she was quite sure that my priority was going to go up significantly tomorrow.
My wife just came back from the pharmacy and she told me that it took them a long time to help her. They warned her about the effect of Dexamethasone and Naproxen on my stomach, despite the use of Pantoprazol. We had already decided that Dexamethasone and Naproxen was too much and as Dexamethasone seems to work against Rheumatism as well we stopped with the Naproxen. This confirms that we did the right thing. By the way: they don’t sell Dexamethasone in tablets larger than 1.5mg and according to the patient information leaflet a dose of 8mg per day is for serious cases. Nice. I hope that the hospital knows what it is doing.
My new physiotherapist is much more gentle but as the leg seems to have improved he didn’t need to have to be rough. After about 15 minutes of massage I did 10 minutes on a home trainer (that went well) and the last few minutes with my right foot on the seat of a rowing simulator. I’ll try to make a picture for you, it is impossible to explain. The exercise is complex as it is forcing me to make a combination of moves that are hardly possible in my case. Still I believe that I should try. Conscious movement may replace unconscious movement. Remind me of that picture!
I feel much better than expected today but there are a few noticeable differences. First of all continuous hiccups. This was worrying me yesterday already by I was too tired to think much of it. As the only new type of medication was the Dexamethasone today I searched the Internet for clues. I found several. Apparently the Dexamethasone may trigger hiccups. In the article the hiccups were suppressed with low dose oral Metoclopramide. I must call the hospital what to do about these hiccups.
Dexamethasone is also used to treat many inflammatory and autoimmune conditions like rheumatoid arthritis. I’m now wondering if there is anything I can or should change to the medication for my Rheumatism. In the end I’m taking quite a high dose of Metatroxate (15mg per week) and Naproxen (1000mg per day).
My leg has recovered a lot but control over micro-movement (especially rotating the ankle joint and bending the knee) are even more affected (have become worse). My right arm feels “heavy” which could mean that the Glioma is approaching the functional areas for initiation and control of my right arm. I’m typing this entire post without break so it may no as bad as it may seem.
Yesterday, while feeding the cats, I was struck by a seizure (for the second time). I felt the seizure coming and was able to tell my wife to call an ambulance before the convulsions really started. I didn’t loose consciousness (neither did I bit my tongue etc.) but after the seizure I was unable to move my right arm, hand and leg like this first time in Japan. The fire brigade had to come to transport me out of our house through a window on the first floor. Must have been quite a show, the whole neighbourhood was present. Under different circumstances I may have enjoyed it as well.
I was taken to the same hospital where I went before (the hospital that will perform the surgery). On the first aid department of the hospital we had to wait for hours. Blood-pressure was high (170 over 100) and once a nurse was able to get a blood sample through the IV (finally she gave up and used a normal needle) all lab results proved normal. I had a Posticatal Paresis (a partial paralyzes that happens especially in case of a clonic-tonic attack) in my right leg. Slowly I recovered the feeling in my arm and hand but my leg remained paralyzed.
My parents came and when it became clear that walking the stairs at home would be no option did they volunteer to get me some support equipment to turn our downstairs into a bedroom/toilet/bathroom. They had a hard time finding the home care center and were only just in time. Thanks guys for the trouble!
The Neurologist on duty called my Neuro-Surgeon and they agreed to perform a CT scan. One scan without and one with contrast liquid. The outcome was an Cerebral Oedema and a slight Midline Shift. I’m especially concerned about the midline shift as this is a condition where one side of the brain pushes aside the other.
The Neurologist prescribed an increase of Keppra (500mg 2 times daily has become 500mg 3 times daily) and Dexamethason (4mg twice daily). Dexamethasone is is used to counteract the development of Oedema. I will be contacted by the team of Neuro-Surgeons to discuss the way forward.
I hope that this seizure at least increases my priority. Especially the The Cerebral Oedema may be caused by a partial increase of the grade of the Glioma (from grade 2 to a partial 3). I was allowed to go home, had a delicious dinner made by my sweetheart and went to bed.
This is a personal weblog. The opinions expressed here represent my own and not those of my employer. In addition, my thoughts and opinions change from time to time. I consider this a necessary consequence of having an open mind.
This weblog is intended to provide a semi-permanent point in time snapshot and manifestation of the various memes running around my brain, and as such any thoughts and opinions expressed within out-of-date posts may not the same, nor even similar, to those I may hold today.
All the characters, names and references to medical institutions and their medical experts and staff who treat or have treated me used in this blog are fictious. If some match those who are alive or dead, it is purely unintentional.
This afternoon we went cycling for the first time in weeks. With my new basketball shoes, my new sweater and my new cap. The shoes give me a lot of support and I was able to do about 75% of the lake before I got tired and my foot started flopping around. We didn’t stop though, we went for the full lake. Putting on these basketball shoes is a pain in the neck. I have to undo some of the shoelaces and then still I can barely manage to put them on. For sure I need a shoehorn. It was a great trip though and a big confidence builder!
Super Nurse just called. She asked how I was doing and referred to my voice mail. She had spoken with the Neuro-Surgeon and they agreed that in case the headache would have become less (disappear) that I can reduce the Dexamethasone. That is however not the case. To minimise the side effects of the Dexamethasone (without knowing I have several: thick feet, desire to eat more, feeling tense and hyper) she gave some advise on how to counter them:
