Involuntary Expertdom

 Hello, first of all an apology for not posting in a while and especially not posting on my 20th survival birthday, which was February 7th 2025!!

As a short summary: I had another MRI and everything is stable! I still live in California, watching with increasing bewilderment the current political ongoings, how this country,which saved my life, is cutting its commitment to science(which is HOW it saved my life), allowing an ignorant "elite" making decisions  on what type of science is dispensable. People, who cannot discriminate "Transgenic" and "Transgender". At first I thought its just a joke, it seemed so ridiculous, at first I refused to believe it. But its not:  (https://www.youtube.com/shorts/_STzs7Jgq3Q) unless that's an AI-generated video.  If this keeps going on at the current pace,  I may have to leave this country again. I am not sure, if I had returned had I known what would come. But I will not go into this here and now. Maybe I will start another blog on this topic: "Notes of a European in Trumpist America". this will be mostly self-therapeutic and to vent my anger over a movement that is in the process destroying the inner makings of one of the best countries in the world (yes, I mean it!). So after this detour- what am I writing about today? 

One of the unexpected side effects of being a long-term survivor of this killer disease, is that every case of brain tumor in my community of friends and colleagues, will be brought  to my attention, asking for advise in the hope, that I could help. I am always very honored to be asked and of course share everything I know, although it does not always help. 10 days ago I learned from a good friend that our common friend (MM.) has been diagnosed with GBM. I know her from my "first time in San Diego" in the meantime she has moved back to Germany and lives in Berlin now. I immediately sent her the information for Dr. Liau (UCLA), who did the terrific job on me, and of Prof. Westphal in Germany, also a highly recommended neurosurgeon. so this makes "another entry" on a very depressing list: 

In my immediate family: (TL.), my brother in law; (AW.) the ex-spouse and love-of his-life of a very close friend of mine (OH.) in Berlin; and (ES.) the secretary of my mentor at the Salk, a joyous spirit in my postdoctoral time, she mailed me her diagnosis in the time when I was still in Germany; Sometimes it feels like a curse! Well, it is a known fact that over the age of 40 cancers in general become more frequent. As a known survivor, I am considered an "Expert" of sorts. And as much as I am glad and honored to be asked for help, what drives me to desperation: in NONE of these cases, I was able to actually help. ALL of them have passed away in the meantime.  And (MM.'s case does not sound very hopeful either) I have said that before: TO HELL WITH CANCER!!

Of course, having been a brain tumor patient, does NOT give me the power to make it go away in other people. I wish it would. Plus my diagnosis was "only" Anaplastic Astocytoma , not Glioblastoma multiforme (GBM) (so malignant glioma grade III versus grade IV).

Either way, what they call "Survivors guilt" is not a stranger to me. Now (MM.) is added to the "list" I had met her in Hamburg when her daughter was still a baby, now she is 8 years old (my own son is 9 now, turning 10). Although it might arrive too late to have an impact, I mailed her the Ben Williams book (Which is not available in Germany), which at the time was my first glimmer of hope, that there are SOME who make it. I had done the same for (TL.) and (AW.), so now this seems like a dark, helpless routine. I think it is not available because in the book he suggests some self-conceived therapy, which is probably the reason why the book cannot be published in Germany (He is no MD, but rather a PhD, a psychologist). I should say, I have not taken any of the drugs he suggests, but I find his reasoning for them quite convincing. For me the book was very important because, it shows there IS someone who survived. This was incredibly helpful and a main motivation for starting this blog.  to show there IS someone alive after, after now 20 years!

And to say it: As a survivor you feel as part of a community. and it's the duty of this community  to support everyone who joins on this path as good as we can. This is a fragile community of people who have kept living despite of the fact they were told there is no hope. What frustrates me deeply right now is that I could keep doing actual research work to find answers or lay groundwork to new therapies, but I cannot find a job. 

Life Science is in a bad shape in the US right now, which brings me back to the beginning of this post. Anyway, to you guys reading this! Keep it up and drop me a note!

Thomass :-)

New Life (again), New Continent (again), Old Problems

Hello again! 

First of all the update on the dreaded MRI (last post): "unchanged", "re-demonstration of large, fluid -filled resection cavity, without evidence for recurrence" Hard to believe for most experienced neuro-oncologists, but I am still riding that curve. After 17 years. (surgery, February 7, 2005 my second birthday.)

OK, but now a little about the real life events: I survived the COVID-crisis so far without catching the bug! I got all the vaccinations of course, as a cancer survivor with 14 rounds of Temozolomide  I probably still belong to the "vulnerable" group (possibly compromized immune system). Not sure if that still counts after so many years (treatment was in 2005, now its 2022). but here I say: "better safe than sorry"

Brain-related aftermath still existing, although nobody acknowledges that ("oh , that I have too") nothing too serious,  sometimes irritable forgetfulness (Where did I put that key? ) mostly small things  but I realised, I seriously depend on my "little helpers" to get things done (laptop, iPhone) I have lots of pop-up-reminders. In general, for a hole in my brain that size its amazing how relatively well I "function" (if thats a purpose in life).

So the latest development, after becoming unemployed at the beginning of the COVID-19 crisis, I was stuck in searching for a new position in science (You remember that I do cancer research):  WE MOVED BACK TO CALIFORNIA!

The last push towards this came (of course) from my wife, who after joining me in Hamburg, where she worked on a project at the "Institute for Traditional Chinese Medicine" for a while and then, after a three year intermezzo in a "real science" institute (her words) in Dortmund, (3 hours train-ride away) ended at the same level like me: being unemployed. And if you know something about Germany, although an "Old" country(44.5years average!! 4th highest in the world),  ageism is abundant and a HUGE hurdle in finding a job.  So us, both being in our 50's found ourselves trapped in a job market unresponsive to our applications (YES: In Germany a photograph AND a Date of birth are expected in a CV!!!)

Bottom line, when nothing moves, one has to move oneself. (sounds deep but is a simple necessity) My wife, through a mail to a SD scientist, managed to get the attention of a big academic/industry institution, which (to our own surprise) made us attractive offers and promised to pay part of the moving expenses, no surprise, we were  flattered and came. after a nightmarishly stressful moving-out experience, we finally have re-established ourselves in San Diego -AGAIN-. Goodbye Germany!

sounding all bright and hopeful, could not stay too long, obviously. In the meantime both of us are out of a job -AGAIN-. different reasons, though, for me it sadly may be connected to the deficits I mentioned above. For my wife it was, because she discovered that her project was based on an artefact leading to misinterpretation of the data. so while i am "let go" her project is officially "on hold" (Means no pay and termination after three months. 

Now we are stuck again, but here we know people and will find something. But here is where my story comes back in. I will need to see that I find something less demanding (VERY difficult to admit to myself), a fast-paced industry environment is probably no longer for me.  Although I am still full of ideas and love nothing more than tackling with complex problems.

This is the task ahead: Find my place in the world -AGAIN-. I have a kid to raise. THAT is a complex problem too. But for me less easy to solve than the consequences of "epigenetic mis-regulation of the Bmi1-gene in tumorigenesis".... ;-)  (My "last" submission, still unpublished, even possibly related to brain cancer) 

But I am ALIVE!!

OK, thank you  if you read this sometimes, drop me a note! Its always good to see that I am not writing a monologue to myself here.

Take care!

(T.)

Unreasonable thoughts on Career and Cancer

Hello, first of all, I am still alive and well (as far as I can tell...)

"Career" is possibly the most irrelevant thing  after a Glioma diagnosis:

Bottom line: Although I am currently submitting a (what I like to believe) potentially high-impact paper  to "Nature Genetics" (if that will go in is a totally different question) I am currently without a job.  (and so is my wife, scientists' lives are unstable) Luckily, here in Germany the social system is good and my heath insurance affordable. 

But now unemployment benefits are running out, so we are very seriously considering to move back to the US/California (despite of all concerns with insurance and so on...), where we both see better chances for a job in Biotech than in Germany (Industry in Germany does literally not even look at your CV when you are over 35.) (-experience-??, -hello-??) 

I had come back to my home country mostly for family reasons: my mom was old and had a stroke. (She has passed away in the meantime).  Now I unexpectedly  find myself considering such a big step as changing continent again(!)

Consequently (here comes the cancer-aspect), this brings up an ugly question: With my "preexisting condition" is that still "worthwhile"? Being all-too-familiar with the long-term outlook of Anaplastic Astrocytoma. Every Neuronocologist would tell me "Oh, you're crazy, just accept your luck, settle in, get a small job to support yourself, and enjoy the time you have." But I guess I AM crazy. I cannot let go that I do think that there is something I still have to do rather than retire. I also find myself thinking, have I not since the beginning tied my struggle against cancer  to a struggle to get back to my science?  Maybe its working what keeps me alive and as soon as I let go the guard, the "monster" will be back and finish its job in an instant?  I never expected these questions would ever arise (because I did not expect to live that long, honestly). But that is what happens now. 

Of course, thats just part of still being alive: problems everybody else faces too, except they don't have this CUT in their life, when "they" told you, ok, thats it, by all we know, you're done. And they do not write a blog about it.

One important consequence of this thinking and re-thinking is whole issue is of course: I will need a rational basis for any decision. So despite of everything I wrote before: I will need to have an MRI again. after not going for a while, I am NOT looking forward to that. 

 I apologize for (in this post) moving away from trying to be helpful for cancer patients, as this clearly is just showing that despite of all, my life goes on, well, maybe this is at least inspiring.  So at this point I cannot tell where the next step of my twisted journey will take me. 

And maybe the MRI will just put an end to all these plans and deliberations. But somehow I do not think so. with this outlook I say to everybody reading this, the "fight against cancer" goes on.  With what I do (as a scientist) and also within my own head. Different from the first aspect (science), the second is mostly sitting and hoping , so not much of a "real" fight.... 

With this "split perspective", let me conclude the post. Everybody reading this, keep it up. I hope to be be back after I had my MRI! (scary) Hopefully with at least the outcome, that I can keep going for a while longer. 

 

Take care, Thomas :-)

15th Birthday!

Today it has been 15 years that I had my surgery in UCLA, performed by Dr. Linda Liau (In the picture below), an incredibly gifted and meticulous neurosurgeon, who saved my life on this day. I still hope , that through doing my science, I will be able to pay the universe back a little something on this narrow escape of mine, so many good people die from brain tumor and I like to think, there is a reason, why I got away and I am supposed to do/achieve SOMEthing important. OK I will be submitting a publication on our data for Oncohistone biology soon, maybe something therapeutic will come out of that. But first in needs to be accepted  by the journal.

For anybody out there with a new diagnosis!  15 years!  Keep fighting that THING  (Sometimes I engage in this "Exercise" to visualise the cancer (or the remaining cells, sitting disseminated throughout he healthy cells in my brain) and EAT them. Grinding them between my teeth, and swallow them. Its a bit of a disgusting image, but I believe it goes in the right direction.

Take care!

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 :-)

12 years!

February 7th 2005, day of surgery. The first doctor who saw me at the first hospital gave me "a year, maybe a year and a half" Too bad I do not have his email address.  I would love to send some pictures of a life that did not happen.
I am aware, medical science says these things are "incurable" but what the heck! Here I am,  12 years have passed, and they were worthwhile!
So any fellow ex-patient reading this, hold on and dont let the bastard get you!

Thomas :-)

A New life......

Maybe not the kind of post you would expect from this kind of blog. 

Just so much: Life continues

"- But there is also life-" Thoughts about family planning as an almost 10-year brain tumor survivor....

Long time no post, I apologize. Actually, there is some unlikely, incredible news in my life I would like to share:

I am becoming a father!!

Back then, when discussing how long to take the Temozolomide Chemotherapy with my doctor ("There is no definite answer"), she told me, several of her former patients told her they wanted to come off early since they were planning to have a child. At the time this seemed just completely otherworldly for me: Diseased,  deathbound, as I felt:
even CONSIDERING having a child  seemed completely unthinkable to me. At the same time, after the darkest days, thinking about what truly counts, I realized what I would really want in my life is to have a family, for me, who always valued independency, this change of attitude felt quite surprising. I observerd myself with this self-observing remoteness that I sometimes have and was genuinely surprised. Now, in our relationship, especially as she already knew me when I got sick, children were not as much a topic as they are in "normal" relationships.
We did talk about it, though. And we came to the conclusion to go ahad anyway. Although being very much aware of my condition (and the possibility of cancer recurrence), we stopped taking contraceptive measures, in a way expecting, it would not happen anyway because of her age. Basically we decided to leave it to destiny. Now she is pregnant!! I WILL BE A FATHER! Its a boy! Healthy as much as medicine can tell. Of course, since I likely inherited a predisposition to my disease he may have too. Old question: is it responsible to have children then?
My answer is also influenced by my life since my surgery and may sound a bit all-too enlightened (I am not, certainly!): 

Every day of life is a gift and worth living!  Despite the knowledge, I may still die from this thing one day. Every day, also the dull, unremarkable days, which are still many. BUT: we all have to die from something some day. And hey, I already got 10years!!!!

That grim Reaper is waiting for all of us somewhere in that corner up there..... Or as my Oncologist once said, the only difference is, that different from most  I have some idea, what it will be. Nobody knows when. especially now, that I held on almost 10 years ( precisely, 07th of February 2015 will be my 10th anniversary since surgery.
I should say both, me and my girlfriend, are not the typical parenting age anymore (she 45 , myself 51)
I agree, it may be selfish, but can I really be blamed for trusting in my survival? Its part of being a survivor to keep living with all consequences, even if fathering as an unlikely cancer survivor of course raises some questions. Anyone, who comes across these lines out there, please let me know your thoughts!
Its a difficult thing. Also this is why I am very happy that, against all odds (age, prior chemotherapy) it happened all naturally, without medical help! (of course it still was medical help that made me live until today!)
Now all this comes at a time after there just was a lot of death and illness in my family. My mother died, last February (aged 92) from a series of strokes after a period of not being able to care for herself anymore, My sister in law died from cancer (aged 65) a year ago, so did her husband, my brother (aged 66), a year and a half ago. All seemed so dominated by dying and deteriorating, all life just being that mercyless long slippery slope towards the inevitable, illness, palliative care, death.

"- But there is also life-"

...the only thing we as insignificant little humans can throw out at this universe.

To say: "YES!"

A life most ordinary

Again, after a long time another "sign of life"! I have to remind myself that I am also writing to tell the world I am still here! 8.5 years post surgery and counting! Todays entry is about litle defects  and the urge to scrutinize every little issue that could hint to something bad re-appearing. No, I have not done an MRI lately. I wrote about the difficulty in this decision before. The last one I did was before I talked my girlfriend into moving here: I wanted to make sure that the status quo is still what it was. And, stupid as it may sound, that it is "worth it" to move in with me. Since then I have seen the Neurologist, but did not specifically ask for the MRI.  Essentially I believe, that if something would really move there in my head, I would know from increasing difficulties. But I am still doing science, just submitting a paper to a well-known journal (which will, inevitably, be rejected, at first at least) (If somebody who follows this blog is working in science too, you know all-too-well what I am talking about!) At least this tells me, I am still able to think straight. However the frequency of typos reminds me of my ( mostly subtle, however sometimes not-so-subtle) defects, I have: Searching for things right in front of me on a crowded shelf, leaving stuff on the table in the restaurant, Also I believe my temper has worsened, compared to what I used to be BEFORE (the "turning point" in my life, my "loss of innocence/immortality". In my old lab I was known to be a "such a mellow guy". Now I can get VERY angry at times. OK, everybody has fights in a relationship. But sometimes the anger on meaningless issues really surprises me. I still would like to find a good meditation group. We had one at Salk back then, which I found extremely helpful in so many ways (anger, fear, concentration, self-awareness). If anything, meditation is the one thing I would highly recommend to any tumor survivor and beyond that, to anyone recovering from brain injury. OK now sorry, short  entry. Have to leave. off to watch a movie now. As I say "a life most ordinary". And isn't that the best thing to have? Once you believed to have lost it for good! I know its not necessary over. But, hell, last thing dies the hope.

Take care,

Thomas :-)

Sleepless in Hamburg

Just a short entry out of sleeplessness. Went to bed and could not sleep. For the last six weeks my girlfriend has been here with me, now she is back in San Diego. A good reason for a sleepless night? Actually, thinking of work. How boring, you could say, but not if you think about that I am working in science. The bad (and also good) thing about this line of work: it eats you alive, you can think about the story you are working on 24/7. It never stops being interesting. And there is always the hope it might lead to something really useful. Something like: Find the key factor in cancer, the "magic vulnerability". Off note, all current science points to the fact this might not exist. Every cancer we look at is different, and will probably need its unique treatment.
Every time science comes up with something novel, exciting and hopeful, in clinical trials it does not work that well. Last keywords: angiogenesis inhibitors, Tyrosine kinase inhibitors (some of which actually do work very well, but they do not cure, just keep growth of cells  in check-> Gleevec, the blockbuster drug for CML, chronic myeloid leukemia).
My current new favorite toy/focus of interest: "Histone Chaperones" These are factors which regulate chromatin, which is the form how our DNA is packaged, and plays a critical role in how genes are turned on and off. And those Histone chaperones regulate the incorporation of histone variants into regions  of  chromatin, thereby regulating whole genomic regions, rather than individual genes. Unfortunately, I do not see, how these factors will be "Druggable". But now I do feel tired. Goodnight. Sorry, not a very revealing entry.

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

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 :-)