Christmas and Remembrance of Things Past ("The Surfing Incident")

finally the end of the year with memories of the Christmas 2005 when I had to cancel my flight to family and home and friends, being left in the hospital with predicted 1 year to live. The day of "the surfing incident" is how I call it now. 20th December 2004. it was the day I died. It was a perfect day, warm, blue skies Santa Ana winds like a gift of a summer day in the middle of Winter. So I said to myself: Before I go home into the winter lets go surf. So I carry some salt in my system back home. Then when paddling in the cold water I had (as I now know) something what is called "Partial seizure". Suddenly It felt like my left arm and leg would'nt belong to me anymore.... very strange. I knew I don't have control ofver my left side. my arm was twitching and felt VERY weird. So I knew I have to get out of the water. I panicked for a moment. Looked around me, and there was nobody. The beach was a cliff so difficult to get out, especially with the surfboard and the waves crashing against the rocks, well, the waves were not so big, to be honest, I'm a fairly poor surfer. Or "was", maybe because since then I haven't been surfing much. too many bad memories. The sandy beach was too far away either. so I had to come up with something. Anyway, I felt I am in serious trouble, and started getting really worried. I almost got into panic. Nobody there, no way to get out, SHIT, I might DIE here! But then the strangest thing happened, as if SOMETHING had put its soothing hand over me, saying, Don't worry, Thomas, you'll get out of here. And I calmed down. got my strength together. waited for the time between two wave sets, shoved my board up. (no idea how I managed that) and somehow made it up the cliff. when I sat on the rocky ground, my arm and leg twitching like they were possessed by an alien force, I just knew: something is seriously wrong with me. I went to my car to wait inside until the symptoms would get better. I waited for 45 minutes, then I decided: I got to get home somehow. No cellphone to call anyone (at the time, I got one since, also because of this experience), I started driving, and went a ridiculous detour to avoid the freeway. Finally at home I called Y., my girlfriend. She came, I described what happened, and we spent the afternoon and evening on the couch, and she tried to convince me its nothing serious (as I did try to calm myself) But then, I know enough biology/medicine to know that all possibilities to explain what happened are equally bad (stroke, tumor). But then, heck I'm still alive! And THIS YEAR I"M GOING HOME for Christmas again!

Love,

T.

A vagabund life (as a scientist)

I am on the Jobhunt (Academic). I do this because I will live and not succumb like the 99.5% of Patients in the graph below.
Of course I don't tell, who would hire somebody who might be facing death within the next year? So whoever reads this: Psssht!!!! Don't tell! ;-)))
You might say: It is not ethical to withhold such a crucial information, to your future employer (betrayal of trust). But I don't have a choice, do I? and, hey, posting this here, I have told the world!!! ;-))) (even if the world doesn't listen!) So after returning from a wild traveltour around the world with a number of stops, I am back home... Too early to tell what will happen. Of course I will have to coordnate with HER. And I hope things will fall into place. It is so difficult, to live with a potential expiration date, well the next MRI is coming up and then I will have another idea about what my odds are, I decide: if this one is still tumor-negative, I believe in my survival. And, maybe, if she wants, I will marry HER and lead a VERY happy life. "happily ever after".
Of course there is no statistics that would support this statement.
Well, still: Kids are probably out of the question. Too irresponsible. And obviously poor genetic material (=cancer-prone me!)

Love Conquers all.....?

She loves me. We are together since a bit more than one month now. Of course I was wondering, if I can do that, get involved with someone, me having a potentially fatal disease (well at least its not infectious), if my tumor starts progressing again, it will be almost as devastating for her as for me. Question is/was: can I do that to somebody? Answer turned out to be: Yes, but I made sure that she understands my odds and what she potentially does to herself. So I hope very much that a.) I will survive!!!!! (at least so sings Donna Summer! And HEY, who am I to question Donna Summer???? She knows! Come on!!!! Life is a wonderful thing, how can it end so prematurely???
and b.) if things turn out bad, at least we both will have had a happy time. Therefore I try to be as happy as I can and to be TOTALLY honest and ABSOLUTELY committed to the relationship, this means: open and not hide anything, which gives the relationship quite a new twist, it has a-strangely to say- incredible spirit of INNOCENCE! Does this come from the intensity how I try to make every kiss in a way that I want to make time stand still? Being loved is the greatest gift of all! The most woderful, incredible thing a human being can give to another. the gift of SELF! and what more do we have than ourselves?

Has anyone seen "Brazil"? the wonderful movie by Terry Gilliam? It has a "Love Conquers All"- alternative version for the US-Market (this is the place where people demand happy endings!): Well I live in the US now (with my cancer), AND I DEMAND A HAPPY ENDING!!!!! Goddammit! ;-)
And I love her! VERY MUCH! what started as a "rational decision" got out of hand and became a very sweet, tender and intimate relationship. I am happy, no matter what my statistics look like. And what else can I do? Make every day count. Live.

"Wenn ich mit Menschen- und mit Engelzungen redete und hätte die Liebe nicht, so wäre ich ein tönendes Erz oder eine klingende Schelle. Und wenn ich prophetisch reden könnte und wüßte alle Geheimnisse und alle Erkenntnis und hätte allen Glauben, so daß ich Berge versetzen könnte, und hätte die Liebe nicht, so wäre ich nichts. Und wenn ich alle meine Habe den Armen gäbe und ließe meinen Leib verbrennen, und hätte die Liebe nicht, so wäre mir's nichts nütze"

Hey! Look at me!!! I am quoting the bible!!! Do I get religious??? Amazing. But its a beautiful piece of text. Without Love one is nothing. I know this refers to religious love. but I think it is not so far away.

(sorry, no time to look up the translation), well, now its out: I am German. Guess I could almost post my real name here.

hypnotized by the snake's eyes

Ok, here it is the image that is always in my head (its from a publication by Stupp et al. N. Engl. J. Med. 2005, 352;10 good work, thank you guys, keep it up!) , who else but a cancer patient can have his future summarized in such a simple graph? I am moving along the "blue curve" (Radiotherapy plus temozolomide), currently at about 30 (32 to be exact) so there is still no safety (you can see the ugly bump downwards at about where I am now, at t=36 months, there is a SINGLE partient without tumor progression out of 287!!!!!!)(means I have no chance, virtually. next MRI will reveal that I am not Mr. Miracle-Man) To overcome being passive about this, I am drinking an amazonian herbal tea now: its made from an herb called "cat's claw" http://en.wikipedia.org/wiki/Uncaria_tomentosa. I am having a cup of this tea every evening now, not sure if it helps, but it keeps up the spirit of fighting, which is probably almost as important as the potential effect of the tea: The enemy doesn't sleep, even if it seems so at the moment. the other "regular treatment" I take is a big spoonfull of Flaxseed Oil from Trader Joe's every day, which is high in Gamma -Linoleic acid (GLA). The idea comes from the Ben Williams-book (of course). I love this book, thank you Ben Williams!!!!!!!! I can't tell you how important this book was for finding the right spirit!!!!!!

http://www.amazon.com/Surviving-Terminal-Cancer-Treatments-Oncologist/dp/1577491165/ref=pd_bbs_sr_1/104-9226906-4144729?ie=UTF8&s=books&qid=1190920671&sr=1-1

He also took Accutane and Melatonin, both of which I don't want to take, mostly because: Accutane can affect the Cholesterol level and mine is high already, and Melatonin makes me too tired. I have some Alchemistic objects in my bedroom which I hope provide some beneficial protection. All to keep the psyche in a positive setting. Next MRI is in November and it will be very important, not sure what I will do if somenthing is moving, If so, for sure I will not climb the Researchers career path anymore. I am also not sure if I would go through therapy until the bitter end.

On another side of Life, and to end with a positive note: I am in love!!! But this is for another blog and definetly requres some more writing. Just so much: it has been threee weeks now and I am very happy. :-)

not every day is bad

another post, no important things to report today, had a fairly uneventful day at work. Submitting an abstract to the ASH (American Society of Hematology)-Meeting in Atlanta in December proved as quite a challenge though. I got much worse with patience after my surgery. So maneuvering my way through 1001 sub-menues and answering stupid questionnaires, when I just want to get the task done drives me crazy.
Missed my meditation class today. thats bad I really should try to go every monday.
Actually, it helps a lot exactly with the patience issue. It also improved my concentration a lot. Well thats probably more an advice to the brain surgery patinents in general than specifically to cancer patients. But also in regards to cancer, I think meditation is a good thing: It just makes the terrible become more bearable and helps me to focus on myself, and I learn how to feel comfortable in my mind again. After the diagnosis I had the feeling my brain doesn't belong to myself anymore but is inhabited by evil entities (cancer cells). Meditation helps to deal with that mindset. I can highly recommend it. OK, have to finish. I am going to workout now, also a helpful strategy to feel healthy (even if it may not help for cancer, it feels very good afterwards. And what feels good can't be all bad, can it?) ;-)
Ok, until next time then! Don't forget: Life's a good thing, even if its hard to see sometimes!

second entry: headache

Hello again, just to give you some insight into how a cancer patient transforms minor bodily discomfort into a full-blown symptom of tumor recurrance: I have a hedache, And of course, as a consequence I am observing my left body half full of suspicion (my tumor was right, so the affected part of the body is left). And I feel dizzy. Is this it? Am I going to die? (well, some day certainly). Is there any twiching? am I loosing conciousness, do I have coordination difficulties? I wish there was a walk-in MRI to check on the status of my brain. Nonsense of course. I should work but this headache keeps me tied to the desk and I find myself writing this thing here. How ridiculous trying to be a scientist after a braintumor diagnosis. after having a golfball-size piece of tumor mass removed from my "most precious organ", or, as one could also say:MYSELF
As usual I am full of doubts.
But what can I do but to live/work on? stopping means let the tumor win. Unacceptable!!!
OK gotta do some work now.

CU

First entry of a potential/hopeful astrocytoma-survivor

Hi I am just starting my first blog, so apologies for poor style, unknowledgeable handling etc. And last but not least I am not writing in my native language. But what the hell!
Here we go:
Why write a blog about/connected to my brain tumor now, after such a long time? Shouldn't I be well-adapted to my state of eternal uncertainty? (will it eventually come back? will it not come back? Is the headache an early sign or was it just the beer/wine combination yesterday? Some of you may know what I am talking about.
I assume I am starting to write this to deal with my frustrations, fears, all the usual stuff....
Today at work (I work as a postdoc in a fairly famous Institute in Southern California, and I do (isn't it ironic?) CANCER RESEARCH. Not on brain tumors though, rather on leukemia. Anyway, from today on I plan to give a sporadic insight into my life/fears/ thoughts, not sure if anyone is interested....but again, what the heck, maybe someone is inspired by the sheer fact that I am still here more than 2 years after diagnosis, and still able to walk/talk/think/drive a car to go to work. Then this blog has its sense.
BTW, If you think you know me, please write me an email (if you know me you know my name and should easily figure out my email address, although I assume you can post a message here, as I mentioned I am new to this and haven't quite figured it out yet), and mention that you came across my blog entry here. (I am curious how exhibitinistic this really is.... and also if there is actually anybody resding this.
One reason to write this is also to see how many of "us" I can reach with something as a blog.
In case someone reads this looking for advice on tretatment, drop me a note and I'll be happy to tell you everything I know: (surgeon/treatment regimen/"alternative" supplements I am taking, the most important book on the topic, some promising publications in the recent scientific literature (on Kinase inhibitors in glioma treatment....)


OK TTYL! Hope I stick to my resolutions and keep on writing this....drop by once in a while and have a look, maybe there is something for you, and if its only to read about someone who is still alive and well (knock on wood)

CU next time

Thomass