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 :-)

MRI-Data=Good !!!!!!!

Just got the mail from my Oncologist, who takes the task to report the MRI data to me:

>"unchanged from 5/08. That is good.

UNCHANGED!!!!!!!! The one single-bestword for me!!!! One should think I get used to the "ceremony", but I am afraid I never will. Anyway, special thanks to those of you out there who sent good thoughts, wishes and prayers, its the unexpected  support which comes as a gift from heaven!!!!! 

 I do feel a bit of a strange pain on my left side though, (=Tumor-opposite side) radiating down my left leg from the spine which probably comes from me falling off my chair in the lab when I had the seizure. Minor inconveniences, being alive without re-growing tumor is what counts!!

MRI tomorrow

I recovered well from the seizure, but of course it set some pessimistic thought processes in motion. My tongue is still sore from when I bit myself during the seizure, and my back still hurts from when I fell off that chair at work. But otherwise I don't seem to have any symptoms.

However since I didn't have any "real symptoms" before my "surfing incident", I AM scared of what tomorrow might reveal. After al, a seizure is a symptom too and if I tell myself again and again tat I just forgot the medication, that little voice in my head still says: "you never know!"

Thanks to you guys who left messages on my last entry!! My MRI is on schedule tomorrow, so keep your fingers crossed, I will make a post as soon as I know the results!!  However, since its friday afternoon, I am not sure if I will have an answer before the weekend! I very much hope so though, as the waiting is the very worst part. Thank God I have a good doctor who understands these concerns.

SO KEEP YOR FINGERS CROSSED!!!!! THANKS FOR THINKING OF ME AND KEEPING ME IN YOUR THOUGHTS AND PRAYERS  AND SENDING GOOD ENERGY!!!!!

Ah well I will be OK! Thats just what I say! Anyway! tonight I am heading out for theater with my girlfriend. She even asked if she should come along to the MRI, but the scary part is not the machine, but rather what's the status in my head. Anyway, I am SO lucky to have somebody who cares and gives me love and support. If you guys out there have someone in your family be there for them!! That is SO important!!!! A big hug can be more help and support than 1000 words!! Ok enough writing for now, out to the theater! Be Happy! Make every minute count!