Wednesday, January 16, 2019

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 :-)

Tuesday, February 7, 2017

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 :-)

Thursday, June 11, 2015

A New life......

Maybe not the kind of post you would expect from this kind of blog. 
Just so much: Life continues

Sunday, December 14, 2014

"- 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!"

Wednesday, September 18, 2013

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 :-)

Thursday, April 19, 2012

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.

Tuesday, February 7, 2012

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!!