Wednesday, June 25, 2008

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 ☺

2 comments:

  1. Thomas

    My husband also has an AA3 (he was diagnosed Feb. 12, 2008). He had a resection, did 33 RTs, now on Temodar (the regular regime, we are with MSKCC). Just curious whether you have read Ben Williams book "Surviving Terminal Cancer" (he is also a scientist and has beaten his grade 4 glioma) and whether you have tried to add in any "cocktail" drug approach such as Accutane, etc.? Any thoughts are always helpful.

    M.W.

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  2. Hello, M. W.

    I do know the book, it was one of the most important books for me during my darkest time.
    I do not use Accutane, as the UCLA group has performed a trial but they didn't see too much effect. MSKCC is an excellent place, I am sure your husband will get the best possible care. In terms of "add-ons", I am drinking a herbal tea from "Cats Claw" and Cherimoya bark. (sounds esoteric but check the internet on Cats Claw)
    From the Ben Williams Book I added Gamma Linoleic Acid (GLA) by taking a daily spoonful of enriched Flaxseed oil (Trader Joes). Sometimes I take Melatonin (mostly for jetlag though) But I feel it makes me too tired so its not part of my "daily regimen"
    Apart from all that, in addition I am a big fan of green tea.

    Good luck and don't let go hope!
    best wishes and lots of good energy to you and your husband. What you are doing is very important as a patient sometimes does not have the mindset to do this unbiassed research over the internet. Too close to home, too close to the bone.

    Thomas :-)

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