7th Birthday

Midnight. I have officially entered the 8th year post surgery. Last MRI was in August 2011 (see last entry)
No cake, unfortunately nobody here with me to celebrate, my girlfriend Hui still living in San Diego. Me being here in Hamburg. No complaints however, I chose my way and I realize, this is an enormous privilege to have, being alive and being able to choose a way.

Ok now more insights another time, I just thought the occasion asks for an entry.

Take care!
 And : If you are patient reading this, just on thing: If I made it up to here, YOU  CAN BEAT THAT THING TOO!! I am not a miracle-man. Just had a good doctor, and probably a lot of luck. Plus Maybe the right attitude helped too. So: You go ahead and CICK THAT CANCER'S BUTT!!

Testing it was.

Despite of my lengthy considerations at the last entry, I finally decided to have another MRI.

To cut this short to the relevant facts: it came out good!!! "No significant changes since the last examination"

Surprisingly, I did not walk the valley of shadows again (mentally speaking), I stayed relatively cool. Did I just get used to it? Or maybe it was the thought: If it had come back, I would notice from emerging defects: increasing forgetfulness, irritability. But talking about especially about those two potential "symptoms": These are soft markers and everybody with a good amount of hypochondric talent can create those in a minute. That's the general problem with brain-related problems: they are hard-if not impossible- to objectively grab. OK, you can make the usual tests, (Touch the tip of your nose with the right or left index finger) the patients among the readers will of course know them all. I do these from time to time.And I constantly watch out for any unexplained muscle twiching on the left, weakness of the left arm or leg, just anything unusual.
So, you will ask: why did you decide to do it? The answer may sound strange and a bit pathetic:

I wanted to make sure, that my girlfriend, who is still living on the Westcoast, if she would finally move to Germany, that I am in good enough shape that it is worthwhile for her moving in with me. At least from the best of my knowledge.  I know this sounds pretentious, but I swear to God, this was going on in my head. OK, maybe it was just the trigger I put forth for a conflict than needed to be resolved. But as things came out good I am happy I did it. I have to say, despite the fear before the procedure, it DOES feel SO GOOD afterwards, but to get a new setpoint for what it feels like to still be OK, and to have something to compare myself to (set my self -examination to zero). Its all good.

I am still a long-term-survivor: 6.5 years and counting!!!! Old age, here I come!!!

Testing or not testing?

Sorry for me being quiet lately. Just not much novelties to report. This is an entry about trying to decide on a question  only a long-term survivor can have the luxury to ponder. I had my last MRI a year ago. actually, more than a year ago. November 2009 to be exact. Now its February 2011. The big question in my mind is: am I neglecting my disease by not getting examined? The issues coming to mind: MRI imaging is not a treatment, it will give me a heads up, should something come back. But then. Something coming back. inevitably means: bad prognosis. Recurring Glioma is pretty much a death sentence. Well, technically, Glioma is a death sentence. And so far I beat it. Here my question: what would I do, if an MRI would show, it came back? Have another surgery? I was incredible lucky to have such a devoted and talented surgeon like Dr Liau at UCLA. My life is almost normal, I am doing science (actually: just writing a paper) again and everything looking as good as one could imagine. Another surgery almost certainly would mean serious defects from the removal of additional brain tissue. Would I do it? Thank God this is a hypothetical question. Many would say: you are cured, you beat it for good, you can relax now and move on with your life. But if there are others in my situation, you may know what I am talking about: Being diagnosed with malignant cancer once and for all destroys this primordial trust in ones body. I am still scared to consider myself "healed". As if there was some magical bad spell in letting the guards dow. I WANT to stay aware, that bad things may happen again anytime. Just hoping that this awareness may be a magic to keep IT away.
I keep on drinking my magic Amazon tea "Cha Una de Gato". But I will not do an MRI anymore. It doesn't help, since even a good result does not mean it will last. I will just have faith&trust that I will live  and not die from brain tumor anymore.

Maybe I should write a book about my time with incurable cancer. Diagnosis December 2004 Surgery February 2005, now february 2011, "rebirth-day" is only three days away (Feb 7th 2005) my "second birthday". Six years. And I was told: "a year, maybe a year and a half"
People out there, I am still here! Maybe I made it long enough to call myself "cured", but I am still afraid. And will be so forever. A price I am happy to pay for being still here. Life is too wonderful a gift, to not accept a price for it.

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!

My first MRI in Germany

Hello, sorry for not blogging a while, as I mentioned after moving to Germany, I started another blog, which is a "normal people blog" well, maybe thats a bit pretentious, to assume that I could ever be a "normal person" again.

Anyhow: today I had my first experience with the German MRI's: The main difference: right afterwards the Radiologist in charge came in, asking for me and telling me: "Its all fine" Since, as usual I was expecting the worst, I am close to giving him a big hug! The tech tells me, "of course, to those patients with serious conditions we want to tell them as soon as possible." To me, being used to wait a day or sometimes longer and biting my fingernails off expecting to hear the horrible news with increasing certainty this is awesome!!!

Here again the link to my "Hamburg-blog", which I very much hope to keep going like a "normal human being" (arrogant me!).

http://elreturnado.blogspot.com/2009/07/out-there-and-back-again.html

Read it and use it as a sign of hope that life can go on after the horror of a brain tumor diagnosis: Of course I am not sure or will ever be sure, but then, who can? even the most healthy can be dead anytime. And I was happy and healthy (to my knowledge) at the time of diagnosis. Hence it caught me SURFING, not the occupation of the sick and weakly. Actually, 2004, the year of my diagnosis probably would have been the happiest of my life so far. I do not believe that one brings disease upon oneself by mental condition, in fact I am fiercely opposed to that idea. the VERY LAST THING one needs as a sick person is some stupid new age smart-ass person telling you "You let this onto you" or: "with a good mindset nobody gets cancer" To me these are childish statements of people who cannot face the fact that not everything, and least of it cancer, is in our own control, that there may be "stochastics" playing a big role in our precious lives. How can that be? Can we subject to randomness?

YES WE ARE! FACE IT!

We are neither immortal nor all-powerful. We are just "little rubber duckies" in the ocean of existence. Tossed around by forces much bigger than we. BUT: This does not mean we cannot be happy!!!! Ah well I am becoming philosophical here and that may even be more pretentious than everything about "Normal People" I said. the only advice I can give to you fellow cancer-patients is : GO OUT AND LIVE A LIFE!! Its worth it! Every second!!!!! Do not let cancer dictate everything! Ok, I do stay away from drugs, but I still get drunk once in a while, and then I even smoke cigarettes sometimes (which is, admittedly, pretty stupid.) and not all of my diet is healthy, although, I believe it may be a good idea to improve on that. Point being made is that life has to be lived, nevertheless (I believe I said that already in a previous entry!) Maybe its this gist for life that keeps me here, or I maybe I'm just damn lucky (more likely).

Sorry, I am not sure if this entry is really helpful to someone with a deteriorating condition. But this is what I feel very strongly, and this is what I can share. For whatever it's worth.

DO NOT BE AFRAID!

BTW: Talking about rubber ducks in the ocean: check this out!!!!

http://rubaduck.com/news/rubber_duck_news-200302-duckies_around_the_world.htm