Wednesday, January 16, 2019

Sleeples in Hamburg again

Still alive. To everybody's surprise I have survived my Anaplastic Astrocytoma by almost 14 years now. I have passed my "14th death day" (19.December 2004, "The Surfing Incident" you can read my post about it (2007 12/09, so it was written much later), I actually outlived my Hamburg Neurologist, his successor was extremely surprised to learn about my story. Which could be considered ironic would it not include the sad death of a good, intelligent and humorous man who always treated me as a person, not as a case.
Life is a strange ride. Now I sent a mail to my back-then oncologist.


Let me share a New Years Resolution:

I am not doing MRI’s anymore. Should the monster come back, I will let things go their way. I do not need to know months in advance, I will learn soon enough. The prospects for recurring brain tumor are just too bad. 

While this may sound terribly pessimistic now, this change in attitude actually gives me back some more “normality”.  We all are riding down our lifeline and the end is certain. Not knowing ones time of death is the normal way too live, everything else is not! If there was a cure, different story, of course, then time is of the essence. But since no fundamental new therapies have emerged, it does not matter, I just may shorten an episode I want to be as short as possible anyhow…..
There is a line by an Austrian band, named Wanda: “Ich will zum Himmel fahrn’,  so schell und bequem wie es geht”

I call this my “Reclaiming of the Right of Ignorance”. For better or worse it helps my life. It cannot be healthy to stare into that hole in my brain every year or so. Every time it flashes me back into my worst sick days. It weakens me and the knowledge that all is ok is very short-lived, because it could start again any day. So where is the benefit?

OK, out there! one more try to get some sleep before the alarm comes on.
Good day!

Thomas :-)

3 comments:

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  2. Thomas,
    Thank you for keeping up your blog! Like you, I met my tumor thanks to a seizure - mine happened in late December 2018, and resulted in some cool 3D MRI images after the trip to the ER (this was my first seizure, and it knocked me out, like one of yours did). That was followed by the search for a neurosurgeon. I found an angel - actually she came with a band of angels - and had a successful MRI-assisted-resection. Then came the test results - what had looked like a glioma was actually an AA "dark star".
    I'm now in the process of getting Temozolomide/radiation, to be followed by 12 months or Temodar chemo (5 on, 23 off). I expect to be on Keppra for the rest of my life (I'm 63). I'm blessed with an amazing oncology team.
    I really appreciate your blog - as you know, the Stupp curve is out there, and it is great to read your posts. I am a long way from considering myself a cancer survivor, but I'm planning/hoping to be one! Congratulations on learning to live with this new life.
    As you say, none of us know how much time we have, and our best plan is to live our life. My very best wishes to you and your family, and my prayers for your long life!
    All the best,
    Chris

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  3. Thomas,
    I hope this finds you well. I'm nearly 11 months out sine my surgery and about to begin 8th round of chemo. So far, so good.
    My bimonthly scans have been good so far, but I'm beginning to understand your decision to discontinue scans and get on with your life. I'm not planning to stop mine any time soon, but then I'm nowhere near 14 years.
    Over the past months I have come to realize what an anomaly you are. As we near the end of the year, I wish you continued health and hopefully happiness.
    All the best,
    Chris

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