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! 

Seizure

OK this was unexpected; I was working in the lab and the last thing before I found myself in the emergency room was that  I was preparing to run my PCR in an agarose gel. from there on all becomes blurry, many people seem hectic and two or so nurses tell me: "You had a seizure" "Did you take your medication?" and so forth, i do not remember all the questions. Despite of being blurred out in my head I remember my frustration, before this episode as I almost had started to feel like a "normal person" again. " Thought I'm finally over this" but no, Thomas you don't get out this easy. Today I am back to my usual self, but stil feel; like I hit a wall (well, I DID hit the floor after all, and that possibly hard!! -hard enough to bleed-)

My problem is: I do not know what it means, OK, I forgot my morning pill, but I did that before without effect, the half-life of Keppra in the blood should be long enough, to be able to drop one dose (but likely not two). Thing is, to my knowledge I only skipped one single dose (but then this already expresses that I am not 100%sure). So is this the first sign of the relapse? This is exactly how I would expect a "final chapter" to begin, seizures with increasing frequency, until they become virtually uncontrollable. Then I will be gone, some would call it a "merciful death" Nothing to witness, as the witness himself is taken out before the event happens. MRI soon then I will know for sure. Scary? YES!!! well its life and death again.

My tongue hurts (I bit myself bloody) and my back is like the back of an 85 year old, every movement is pain, and I feel stiff.

yesterday I slept half of the day, which felt good. forget about everything. This is when one feels alone (despite of loving girlfriend) THAT road nobody can walk with me! And nobody should, because there  is no way back. And its not a scenic road.  

OK!!!!!!!!!!!!!!

ENOUGH of morbid thinking, I can continue when the MRI comes back enhancement-positive. (which it will not!!!!!!!! GODDAMMIT!!!!) Yes, what will I do when it does? I have no idea yet. honest, rather sobering answer after all this writing making believe I'm a survivor. And heck, I AM!!!!!!!! Its not meant for me yet, I still have things to do! MY life is not complete yet, I have debt to pay. to my mice and a good lot of people who helped me along the way.

Isn't it almost funny, how I flee to these metaphysical viewpoins when things start looking dire again? 

As Nietzsche said: "Menschliches, allzumenschliches." But, hey, whats wrong with that??

Touched by the whale

The following story goes back about two or three years. it took place at Laguna San Ignacio in Baja California, Mexico.
I went with friends for watching the Gray Whale, these creatures come to Laguna San Ignacio and the adjacent Ojo de Liebre Lagoon, (better known under the name of the adjacent town, Guerrero Negro)to give birth and for the first months of the young whales.


It is also the famous place of the "friendly whales" a rather unique phenomenon: whales get interested in the human whalewatchers and come so close to the boats that they can be touched with bare hands (Photo above). I had gone to Guerrero Negro before twice,  it is quite spectacular: The whales come right to the boat and can be easily touched. One gets to rub a whales back as if it was a cow in the field (the breath smells similar!!! thats the reason I use this comparison)
The two times in Guerrero Negro,I had plenty of opportunity to touch whales.
Now this visit when we came to Laguna San Ignacio instead, it was different: It was earlier during the year so the mating was still going on, the sea was wilder as it was windy and the whales had "better things to do" than to mingle with curious humans (who wouldn't understand that a pretty whale lady prefers a handsome whale guy over a boat with tourists????

Now here comes me, the crazy brain tumor patient with a little detour: Since I as a child, I have this odd habit that I like to make bets on things and the outcome of those bets should tell my future: when we came to San Ignacio: I decided "OK if I can touch a whale I will get out of this brain tumor thing alive. (I thought, coming from my previous experience, that this will be easy).
But it wasn't. I basically had given up up already when the boat turned back. One whale (probably an older female), however headed to our boat. I reasoned it must be older, because of the size of course, and because she was neither with a calf nor engaged in the mating activities. She dived underneath the boat, I did not expect much, as the whales seemed rather unaccessible this time. But still as I had my bet going on, I put my hand as deep in the water as possible. And while diving under our boat the whale turned to its back and TOUCHED MY FINGERS VERY LIGHTLY WITH ONE OF ITS SIDE-FINS!!! It was definitely NOT me touching the whale, but the whale TOUCHING ME,  INTENTIONALLY (so it felt)!!! I was marveled. it felt unbelievable. like a confirmation from a higher authority, the "high committee of the species of gray whales" had decided: "Thomas, you will make it!!!" I will never forget this moment.
Since then I say to myself "Thomas, nothing can happen to you: you were touched by the whale"I know how weird this might sound: making bets on my life about weird natural phenomena which have no real relationship with me or my disease. Anyway, apart from all the reasoning, it gave me confidence and maybe thats what I needed more than anything else. Thank you, you unknown whale!!!! regardless!!

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.