Bad day

Hi just very short, as an update on the daily struggle:
Today I am having trouble to focus on work or anything else. My brain feels like pudding. Of course the hypochondriac in me raises his little voice: Here we go!! Thats it again: the tumor is coming back!!!!! Of course I had this before, and some of the people out there will probably tell me: Come on!!! Its FRIDAY!!! Thats completely normal, who wants to focus on WORK on a Friday afternoon???

Anyway, I will work on some Images I took yesterday at the microscope, thats easy and I don't need to run around.
Take care you out there! I know this is common, but different from you "normal people" I have a very ugly "box of similar things" to put this into. And therefore it makes me feel bad and anxious!
Have a nice weekend, guess you need it as much as I do.

T.

Dealing With Literature

This entry is inspired from a comment on my "survival curve" in the "Another MRI" entry from May this year. As a cancer patient, diagnosed with a malignant cancer with poor prognosis or, later on (hopefully) as "cancer survivor" -euphemistically, since recurrences can occur even after a long time (depending on tumor type though) one has to deal with the hard facts: The literature o your own condition might not always be encouraging, sometimes straight-out devastating!!!! Big question is: How to deal with that???
Before going ito this, here a quick "disclaimer":
For the patient as a general rule;
Information is everything!!
Learn everything you can about your cancer!!! You have to know your enemy, if you want to beat it:

-what cancer is it exactly that I have? (your doctor)
-What is known about my type of cancer at this point? (American Cancer Society
, PubMed)
-what are the treatments which are state of the art right now? (PPubMed)
-where are these treatments performed with best success (clinical trials?)
-can I get in there? (contact the trial directly, or through your doctor!)
-what other things can I possibly take to increase my chances to avoid return of the cancer (recurrence)? (herbal/alternative treatments/supplements, general health)

After this initial phase, however, comes a second phase, very different from the first one, and essentially lasting for the rest of your/the cancer-survivors life:
The phase how to deal with depressing information:
“survival rates are poor”
“despite improvements in therapy, most patients invariably develop tumor recurrence.”
Or, as in the last one here:
5. Prognosis
Virtually all patients with malignant glioma will experience recurrence and will die of progressive disease.
So the message is: No hope, you/I will die inevitably.
Also, after 3 years in remission, the prospect of a median survival of 5 years is not exactly encouraging anymore
However, the announcement of death is nothing that can help us in any way.
So the first decision to be made is: live or not to live. Since this is a very philosophical question in itself I do it want to indulge in it for too long here. Only so much. I have decided on this question in the water with my surfboard the day when I had my seizure, and didn’t know how to make it out of the water: I realized: “I want to live” There was no question, no doubt at all.
I very much believe this decision is crucial for the fight against cancer!!!
But I should mention here that I am certainly not the superman, who has this indestructible desire for life. I am , at least so I see myself, more of a a melancholy type, who has some serious doubts about the whole “is it all worth it?” and “will humankind survive?” –thing. The surf accident decision was really strictly-out-of-the-belly without much thinking, it was just there, maybe also out of some semi-mystical belief that there is still something out there for me to do (in science, life, whatever). And since I am supposed to do it, I cannot die yet.
Now, what is my conclusion from this?For now, I avoid submerging myself into literature-searches, now that I am up-to date on therapies and newer developments, as long as there is no breakthrough, I will just try to live healthy, and believe in myself.
In the end we all die: “No one will get out of here alive!!” (Don’t know, where this is from but it’s a great quote!)
briefly: Learn what can be learned in the literature, and then Live what needs to be be lived WITHOUT LIterature. Smashing your head against the statistics will not help anyone. I am living from day to day and am grateful for every day/minute I have.

letter to my Neurosurgeon at UCLA

Dear Linda,

Hope everything is fine. It is with me, so it seems:
Here the CD with my latest MRI.

As I mentioned last time I am having my MRI’s every 6 months now.
Here is a copy of the latest data, which was on May 19th. According to the resident radiologist: “No significant change compared to prior study, with redemonstration of 
postsurgical and postradiation changes from prior astrocytoma treatment. No 
evidence of recurrence.”
I think the CD has also copies of some of the older files, but not all of them , as I had my MRIs over time at different facilities.
I will travel to Germany for 10 days on Sunday, for a jobinterview with Zeiss (Microscopes). I also won a rather prestigious German academic fellowship (the “Heisenberg-Fellowship”) which can cover my salary for up to 5 years. I am negotiating with a potential hosting lab. Lets see. I am confident.
So you see, I am still capable to write research-proposals and also to develop some good enough ideas, despite of those missing regions in my right (creative) hemisphere. But the brain is a mystery, to you maybe less than to me, since you have the “hands-on experience”. (lame joke, sorry).
So this is great and actually a wonderful outside confirmation that I can still do science. But at the same time I am not sure if academia is the right path for me. Too much fighting too little security, especially as at one point I would like to have maybe something like a family.
I assume you know what I am talking about, as the brain tumor program is an academic institution of UCLA, and therefore part of the funding crisis in the US. 

I will keep on sending my MRIs, hoping that a complete documentation of my case might end up as one of the success stories of your department….

All the best

Thomas ☺

Another MRI :-)

I had another MRI exam this week. Of course I was scared (I always am, its life and death after all) But thank God I have a loving girlfriend who is a BIG support.
I got the result already:
...seems I still stay alive.
_____________________________________________________
My current self-treatment regimen: Green tea (lots), Trader Joe's Flaxseed Oil (rich in GLA, gamma linoleic acid), one big sip per day, morning or evening. Daily 1 cup of tea made from a mixture of Cherimoya/Graviola bark and "Cats Claw" per day http://www.kcweb.com/herb/catsclaw.htm
http://www.healthyheartht.info/graviola.htm#graviolatree
______________________________________________________



So far there are NO SIGNS OF TUMOR RECURRANCE!! No voucher for permanent cure of course so I will continue my "personalized anti-brain tumor regimen".

I was very sad to hear that Teddy Kennedy (whom I respect very much) was diagnosed with Glioma. My best wishes are with him and I sincerely hope he will be able to continue to be as inspiring as he was throughout his (pre-diagnosis) life.

Interesting Article for people with Brain Tumor!! Read pls!

http://healthorbit.ca/login1.asp?msg=1&neidws=142130508

Common Virus May Serve as Target for Vaccine in Fight Against Deadly Brain Tumors

DURHAM, N.C. –5/15/2008- By targeting a common virus, doctors may be able to extend the lives of patients diagnosed with the most prevalent and deadly type of brain tumor, according to a study led by researchers in Duke's Preston Robert Tisch Brain Tumor Center.


A type of herpes virus called human cytomegalovirus (CMV) is found in up to 80 percent of Americans, though the virus normally produces very few clinical symptoms, is dormant, and usually undetectable in most people. However, more than 80 percent of patients newly diagnosed with the brain cancer glioblastoma multiforme (GBM) exhibit detectable CMV in their blood as well as in their tumors. The Duke team thought this might provide an opportunity to target brain tumors by going after the virus.

Interested?
Go talk to your Doctor about it!
Take care,

T.

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!)