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