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

In Hamburg now & still doing fine

..one clearly can say this is crazy to leave the safety of my social network behind (or: my "Support System"(as they like to say in the medical field), and move to another continent to follow a "career" that I may never have...

I am in Hamburg now, as I announced I moved back to Europe to take um a position at the "Research Institute of the Childrens Cancer Center Hamburg". Actually, I started a new blog on my "new life". Check out:

http://elreturnado.blogspot.com/

for my "New Adventures in the Old World".

Its more on the lighter side, that is, not as serious as this one. I'm still alive and that is one of my lessons learned:

Life has to be lived. Nevertheless. Hope I have a future. Four years progression-free is good, but I don't think there is, statistically, speaking, a "safe endpoint"with gliomas.

Once a cancer patient, always a cancer patient. But, regardless of this, after a while one becomes a "cancer survivor" YEAH!!!!!

I'll keep this going though, also depending on my development. But of course I'd rather spend more time "on the light side" and act like a normal, healthy person.

Take care and lots of love!

Thomas

Blooming Artifacts :-)

I know its a bit strange to publish detailed medical reports in a blog, but after all its good. So why not? it may help somebody to make sense out of his/her own stuff. And : on the lighter side: to be someone who has "Blooming artifacts" in his brain, that sounds very much like me. I like that, believe it or not. ;-)))

Take care, and if you're another survivor, keep it up and kick that cancer's butt!

HISTORY:

Status-post resection of astrocytoma

COMPARISON STUDIES:

Brain MRI 10/31/08, 5/19/08, 5/16/07

PULSE SEQUENCES:

MR imaging was performed on a 1.5 Tesla superconducting magnet using T2,

FLAIR, T1, gradient-echo T2*, and diffusion weighted pulse sequences.

Following intravenous injection of 10 ml of MultiHance, additional T1-weighted

images were obtained in axial and coronal planes.

FINDINGS:

Again seen is the large right frontal lobe resection cavity with surrounding

FLAIR signal hyperintensity.  Inferior to this is a stable extra-axial fluid

collection which is communicating with the right lateral ventricle.  The

ventricular sizes are unchanged.

There are stable blooming artifacts from chronic blood products identified in

the right frontal and temporal lobes.

Redemonstration of the increased T2 and FLAIR signal in the right frontal

white matter, compatible with chronic edema versus gliosis.

No evidence of abnormal enhancement on postcontrast sequences.

IMPRESSION:

No significant change compared to multiple MRIs dating back to 5/16/07. No

definite evidence of tumor recurrence.

Interesting for all Glioma patients

Hello, everybody. Just came back from a 2 1/2-week trip to China, with my girlfriend. But this blog post is to share a link: I just discovered a short article by Ben Williams, probably the most prominent of Glioma-survivors (its 2 years old, so I haven't done my homework!) Go read it: the link is: http://www.virtualtrials.com/williams.cfm

so much for today, more about China soon.

Take care and stay alive and healthy!

Thomas :-)