I was not that much ill or feeling sick during the first two chemo cycles but this 3rd cycle hit me hard. But let me start at the beginning. Last week Wednesday I visited the Neuro-Oncologist for a regular “chemo-visit”. Super-nurse was also there, a very pleasant surprise. The Neuro-Oncologist explained that everything looked ok to them and the chemo didn’t have to be adjusted. He gave us a receipt for the 3rd cycle.
The first two days I was not affected by side effects but from day three I was becoming more and more nauseous until the point that had to throw up. I was feeling so sick (I was still heaving long after my stomach was empty)! What was worse that I threw up only half an hour after I took my medication. Monling was so brave to inspect my vomit looking pills. And indeed she found a tablet of Pantozol (protection for my stomach) and vitamin pills. The Keppra pills were probably all dissolved by my gastric acid.
Fortunately I had taken the chemo (Temodal) one hour before I threw up and so it was long gone from my stomach. We decided to not to let me take another 1250 mg Keppra because we were not sure how much my body had absorbed in the first place. That decision would increase the chance on seizures but what the heck. Later we called Super nurse and she confirmed that we handled the situation correctly.
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!
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!
I had a minor seizure today. I felt it coming as the paralyses spread from my hand to my fingers and to my arm. I expected it to go everywhere else but it affected only my hand actually. I called for my wife, could talk with her and my right leg was mobile but I still dare not to move my body. The fear for a full blown seizure was too great. I decided against calling Super Nurse, she’ll call tomorrow anyway. It took perhaps 15 minutes before my hand was back to normal but even now (12 hours later) my right fist and left fist do not feel the same. It is an awkward feeling. I expect that the additional Keppra that I take since Seizure II may have anything to do with the fact that it didn’t spread. A good question for tomorrow.
I’m making long hours, like yesterday and the day before yesterday. The implementation of the Budget Module in Salesforce (FY2009) requires a lot of coordination and although I’m now officially staff-less do I get great support from my friend the Salesforce guru. He does all the work actually. Thanks matey! Today I had to send a few e-mails and I feel that I did reasonably well. Not too many errors.
I ordered a book yesterday from a (still) minute publisher called De Werken in Amsterdam. Today it was promptly delivered. They publish books that smell good, feel good and look great. They are an honest publisher who try to make a difference. I hardly ever read Dutch books but this book made me change my mind. The book is about Boudewijn Büch (1948-2002), a Dutch poet, writer and TV programme maker with a very interesting fascination for Goethe and Mick Jagger. I have never met Boudewijn but I did meet his brother Menno several times in a great bar in Amsterdam (Bar ‘t vliegertje). A pioneer as far as sex lines and sex TV programmes are concerned (Menno Büch-Dare to Love). Interesting characters both brothers. I’m looking forward to reading this book.
I was called by a doctor today who was seeking my participation in a Keppra research programme. I have agreed to at least listen to her objectives. I was also invited for a group discussion with suppliers, doctors and patients on Enbrel, a special drug against Rheumatism. I have been suffering from autoimmune disorders for most of my life and Enbrel (TNF Blocker) was the only thing that helped. Just once a week an injection (subcutaneous so a piece of cake) and I was completely free of complaints. Great job Wyeth! Unfortunately I’m no longer allowed to take Enbrel as it seems that for fighting a brain tumor you need a hyperactive immune system.
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!
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.
I commented on something Cybertcm wrote in his Blog. After a few days did I receive a lengthy explanation and set of instructions. I never asked for this. It is a nice example of the unexpected warm support I get from people I know but didn’t consider a friend and even people I didn’t know, like Cybetcm. Cybertcm must have studied my blog, collected my symptoms and complaints and has written the explanation and instructions. That must have taken time and energy that he was willing to spend on me. Someone he has never met.
How unbelievable kind is that? Since I was diagnosed with a brain tumor have several people reacted in a similar way. I received expensive and creative gifts, some friends travelled a long distance by plane to cheer me up, I was invited for a pop concerts, a good friend invited me for a fun weekend abroad, others volunteered drive me as I’m no longer allowed to drive a car.
Cybertcm suggests a treatment that aims to remove phlegm, improve blood circulation and to improve heart and body strength. I don’t want to include his advice in my blog as I consider that unfair (if you’re interested then please contact him directly through his blog) but his advice makes sense to me. Cybertcm. thanks so very much for your help!
A major headache and sleeplessness resulted in a rough night last night. A reaction on the stress of MEG, MRI and fMRI. Today my dear sister celebrated her birthday by inviting my parents and us for lunch. And a nice lunch it was. She gave me a CD (my parents gave me a book) for being brave enough to get through the fMRI. I feel kind of ambiguous about that. On one hand do I appreciate that they care. They must be about as concerned as we are about what is going on in my life at the moment. On the other hand do I prefer not to get any sympathy as I feel that I must be strong to face what is coming towards me.
I am 47 years old but I know that I will always be a son and brother. I can’t ask my family to (pretend not to) care as I understand this but it forces me to either downplay my real feelings or discuss this ‘problem’ with them. I’m sure that they will perceive the latter as a rejection which is for sure not how we feel and what we want. Anybody out there with a view and/or experience on that? How to deal with the love of your family in situations like these?
WordPress has created some powerful features like Blog Surfer and Tag Surfer that allow me to keep an eye out on interesting stuff related to my blog. Pharmawatchdog writes that most anti-epileptic drugs (like Keppra) seem to double the risk of suicidal behavior (up to 0.43%). Although it is not a huge increase is it interesting to read that a drug that reduces the risk of a seizure in fact increases the risk of suicide. What to do here. It have recently learned that my desire to control gives me the strength to deal with my brain tumor but what does control mean if your own ‘vision’ can’t be trusted.
I have decided some time ago that I want to have the freedom to decide (control), for myself and my family, when my life is not worth living anymore. I realize that this is quite a controversial topic for some and even for myself. The Awake Craniotomy comes closer and so does the deadline for making the arrangements for euthanasia. I’m positive that I don’t need it but it’s like an insurance: you take it for the small chance that … . And then it is better to have it properly arranged. On Monday I will have a meeting with my General Practitioner to discuss his involvement (which is required by Dutch law).
I had prepared myself for a easy check today. No tunnels and other complex apparatus, just a 2-hour check answering questions on how I feel and exercises to decide where my brain has gone. It turned out to be a nerve wracking experience. I met with the head of Neuro-Psychology in and his assistant, both friendly and capable persons. During the introductions the head was called away so that left me with the assistant. I was asked to perform a series of tests that challenged my cognitive functions like the ability to concentrate, learn and plan but also reaction speed, work, memory etc.
The test were very different and often very demanding. I had a hard time with most tests related to memory and got very upset about my inability to memorize and reproduce multiple series of numbers. At one moment during a writing test was I physically unable to write a word (pen stuck on paper) whereas I could ’see’ the proper spelling of the word. Prior to the tests had we discussed the effect of Keppra on concentration and emotion already. I now believe that the effect is much stronger than I thought.
I will get the results of this Neuro-Psychological check from the Neuro-Surgeon on the 19th of February. The test will be repeated in 6 months to see what (positive) effect surgery has had on my cognitive functions.
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.
