Short notice

OK I realize, in order to keep this a hopeful site, I need to provide a sign of life once in a while: Actually, I was busy watching the world cup, settling into Hamburg, getting my projects off the ground (The latter two being on the slow side). But health-wise I am still fine, apart from the usual attacks of hypochondria: I realize I am impatient and can get rather angry, which I think did not happen so much in the past. And of course the over-sensitized brain-cancer-survivor -brain (haha) transforms this into possible early signs of tumor recurrence. OK. I honestly DO NOT BELIEVE, this is actually the case. But, to tell you the truth, It has crossed my mind. I ride my bike to work every day, take my anti-seizure meds, drink my green  and my Una de Gato -teas, fight with concentration problems, live with my occasional forgetfulness. Overall not bad for a guy with a gulfball-size piece of brain tissue missing, no?
only so much :

I AM STILL HERE!!!

Defects to live with.

One typical comment I hear from fiends on my condition, is that every time I mention a specific defect, I have through the tumor and the following surgery,
I do get comments like :
 "Oh I have that all the time" "This happens to me too".

 While this is meant in a nice way to make me feel normal and healthy, over time it turns around and gets annoying, if I want it or not. It feels like my frustration is just imaginary and not real. However, if I mention a defect its because I realize it as something I am constantly struggling with, and WAS NOT in the past. One typical thing is: short-term memory problems, like putting stuff in a place and not remembering where, going back in the apartment to pick up something forgotten and forgetting what it was, while getting inside.

Guys, I know what you want to comment right now, believe me I know its meant well, but don't do it, please. if you are a brain tumor patient, however, you know exactly what I am talking about. Its small things and, Heaven knows I am SO grateful that this is all, for all that counts, I could be paralyzed, peeing in my bed every night. Instead , I am working as a scientist, write papers and successfully apply for grants.

All this that thanks to a very skilled neurosurgeon! Thank you, Linda! I cannot tell how much this means, your dedication and thoroughness and also your courage, to get that last, very deep lying piece of tumor you saw in the in-OP MRI!!!

A strange deficit that occurred last wednesday: we have a lab meeting at 8:30, which is "half nine" in German. Since I'm a late guy, I always have a hard time to get there that early, well, last wednesday I came late. However: Until I entered the institute I was certain, I would be perfectly on time. I only noticed that I could open the door without the key card (which works only after 9). I have no idea, how I managed to get the time so wrong! somehow half nine must have translated into 9:30 instead of 8:30. I know I did not have any seizure, because riding the bus I would have missed the stop. Plus I was among people somebody would have noticed for sure!

Well, doing science is the best rehab for all this. because  IT MUST NOT HAPPEN, if I want to perform my job halfway OK. So this is a very strong force that keeps me fighting against those frustrating little defects (and they are so little, that I almost feel ashamed complaining, since I know very well, what other people are going through... But every little unexpected defect brings back that FEAR... it may all start again!!!)
Again I thank God that these are all  my "Problems" at the moment. It could be very different, and I'd like to remind you of the statistics for Glioblastoma/Anaplastic Astrocytoma I posted in an old entry early in this blog. But I' m still here, and this is one big reason or writing this blog: THRE ARE SOME WHO GET OUT OF IT!! Do NOT give up hope early! You (or your loved one) may be one also! But for that believe in yourself and reject that THING from the deepest heart! There are no guarantees, but are there any guarantees in life at all? Be bold and cherish life! And stay alive!!

Science arrives!

I am excited!

I think I already mentioned that I am also a scientist:

well quite a while ago, in course of my regular reading, I came across a fascinating paper.its by Timothy Ley, an important scientist inthe Leukemia field (I am working in leukemia). What they did , was to sequence the entire genome (!!) of leukemic cells. Thanks to new technology, this has become possible!!! Of course I am also a patient and therefore I realized, this is an option for myself to

a.) get information about my own condition,that may help me survive, and

b.) make something good come out of a terrible disease.

Since at the time I still was at the Salk Institute (one of the top research institutes of the word!!!) I proposed a "project" to my Neurosurgeon. the deciphering of the human "Gliome" (Glioma-genome), plus I attached the Timothy Ley- Nature paper about the AML genome.

Surprisingly she didnt just laugh at it, as a crazy idea by some desperate patient, but she got interested!!! Now we will apply for funding, so that my own genome (plus also my mothers, as a control) might indeed get sequenced and compared with MY CANCER to (maybe) find out, what went terribly wrong.

Of course I know that this may not help me at all, as a matter of fact, many diseases where we know the mutation are still incurable: Chorea Huntington being only one example: We know exactly where the mutation lies, a polyglutamin stretch on the protein Huntigtin, However Having the mutation still means you will eventually die from the disease. But of course, you don't know until you try, and I think it has something, well, "poetical", to be a patient and write a research proposal about a disease that might kill me, the writer of the research proposal! If the study comes together, It will make my genome publicly available for all researchers to compare their own glioma studies to. Its a bit crazy, but it may get real!!! Imagine! Just imagine! As a matter of fact it may not get funded for the very fact that I am involved too personally, conflict of interest, may not be good for the science! Whatever happens, I will take it. But Imagine! IMAGINE!