Evaluation of my 6th chemo

During the 5th evaluation (Evaluation of my 5th chemo) we received some very confusing news. Today we heard why there was so much confusion between all parties: the International Standard for grading tumors has changed. The spectrum of grading tumors has shifted towards lower grade tumors: what used to be called a grade three tumor may now be called a grade four tumor (if it is a ‘bad’ grade three). If you’re confused I have probably explained it the wrong way. Just let me know (send an e-mail to Cranius). 

Dr. Büter (Neuro-Oncologist)

In fact the neuro-oncologist explained that it also depends on where you perform the biopsies. If you perform a biopsy in one part of the tumor you may see a very different grade tumor than if you perform the same biopsy in the same tumor but only a few millimetres away. Very reassuring of course. Not!

They asked how I was doing and I told them that the headaches (in the left side of my brain) are regularly quite severe and that the skin covering the hole where the boneflap used to be formed a bubble (instead of the normal slight hollow formed by a much softer skin).

I had a (minor) seizure on the 24th of June. Then I felt the seizure start at my right hand to slowly ‘invade’ my right arm, my right leg and the right side of my face (subsequently) until my right side was completely paralized. I even couldn’t speak. The previous time I had a (minor) seizure was on the 27th of February (2009). That (low) frequency they thought was good news.

We are left with many questions, mainly because of the discrepancy between various bits of information: they just don’t match. We can’t believe that they are telling us porkies so that our only conclusion can be that they don’t know. We can only rely on ourselves and on filtered medical information (by the medical staff or ourselves). Such as the results of my MRI scans. Now that sad conclusion brings us onto a happy topic.

My blood values (bone marrow: good, kidneys: good and my liver: good), no fever, insignificant high blood pressure (max 150/99) together with my good condition (I still visit the RCA twice per week) guarantee optimal conditions for a longer life. The neuro-oncologist and neurologist compared three MRI scan results for us:

• just before the first chemo (MRI 09JAN2009, evaluation 14JAN2009)
• after the third month (MRI 27MAR2009, evaluation 08APR2009)
• after the sixth month (MRI 28JUN2009, evaluation 01JUL2009)

The bright white tumor tissue on the MRI scan has not only not grown but has also slightly reduced in size!! So we can’t predict how much longer I will live but for sure it’s longer than what we thought before.

Budget and Personal Finance

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!

Seizure III (Minor)

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.

Priority

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!

Seizure II

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.