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Evaluation of my 6th chemo

July 7, 2009

healing[1]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)

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.

4 comments

  1. Well Peter, these are great news!
    I would not rely that much in doctors as well. It is clear that there is (always) a limit in their knowledge and evaluation.
    So, I can just say: take it easy and enjoy yourself as much as you can :)

    Take care,
    Filippo


  2. Peter, this all sounds very positive. I think that each one of us should live each and every day as if it is our last ~ because none of us know when our time will come.

    Many years ago, one of my dearest friends had malignant melanoma (and eventually died from it) ~ however, another fiend who was fit and healthy died first in a sudden and tragic motorbike accident. We could never have predicted that the healthy friend would die first. Such is life.

    Of course, when you have a serious medical issue such as yours, you are aware that your life is likely to be shorter than you should be able to expect. I have noticed that you seem to be able to discuss your projected length of life with ease ~ almost matter of fact ~ as if you are dicussing a less important thing. Please tell me to mind my own business if you wish ~ but how and what are you thinking about the future? Do you repress it all and just try to enjoy the moment ~ or have you given it thought and come to terms with the future ~ whatever that future brings? Have you found your own inner peace?

    I hope for you: that the tumour will continue shrinking, that treatment will be effective and you will stay as fit and well for as long as possible. Blessings to you.

    Take care.


    • I think Mark (Miller) described part of the answer so well in the first paragraph of his latest post (Blogging in B Minor – The power of today). Don’t think about yesterday, don’t think about tomorrow, just think about today.

      The other part of the answer is based on what you said yourself: I like to think that I’ve come to terms with my future. That I’ve managed to reach all goals that I wanted to reach. I’ve stricken off (is that proper English?) every important point of my “100 things to do before I die”-list (this list I made many years ago).

      Today I’m more concerned about my wife and my family. How will they go on when I’m no longer here? So I’m dealing with my will, my “stop resuscitation” statement and my declaration to donate my body to science. Besides that I must get all my address book (digital and printed) sorted. So that is also keeping me going. Something prevents me from paying too much attention to these topics. Maybe that’s just as well.


  3. Goed nieuws dus Peter. Fijn om te lezen. Dat wat je vertelt, over wat je allemaal bezig houdt, dat had mijn moeder ook. Heel moeilijk, voor haar maar ook voor ons, want is er advies? Ik denk het niet, immers zal ieder het op een andere manier doen. Als dat wat je doet, goed voelt bij je dan moet je dat volgen lijkt me. Heel veel sterkte en kracht toegewenst Payt.



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