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!"