Wednesday, September 18, 2013

A life most ordinary

Again, after a long time another "sign of life"! I have to remind myself that I am also writing to tell the world I am still here! 8.5 years post surgery and counting! Todays entry is about litle defects  and the urge to scrutinize every little issue that could hint to something bad re-appearing. No, I have not done an MRI lately. I wrote about the difficulty in this decision before. The last one I did was before I talked my girlfriend into moving here: I wanted to make sure that the status quo is still what it was. And, stupid as it may sound, that it is "worth it" to move in with me. Since then I have seen the Neurologist, but did not specifically ask for the MRI.  Essentially I believe, that if something would really move there in my head, I would know from increasing difficulties. But I am still doing science, just submitting a paper to a well-known journal (which will, inevitably, be rejected, at first at least) (If somebody who follows this blog is working in science too, you know all-too-well what I am talking about!) At least this tells me, I am still able to think straight. However the frequency of typos reminds me of my ( mostly subtle, however sometimes not-so-subtle) defects, I have: Searching for things right in front of me on a crowded shelf, leaving stuff on the table in the restaurant, Also I believe my temper has worsened, compared to what I used to be BEFORE (the "turning point" in my life, my "loss of innocence/immortality". In my old lab I was known to be a "such a mellow guy". Now I can get VERY angry at times. OK, everybody has fights in a relationship. But sometimes the anger on meaningless issues really surprises me. I still would like to find a good meditation group. We had one at Salk back then, which I found extremely helpful in so many ways (anger, fear, concentration, self-awareness). If anything, meditation is the one thing I would highly recommend to any tumor survivor and beyond that, to anyone recovering from brain injury. OK now sorry, short  entry. Have to leave. off to watch a movie now. As I say "a life most ordinary". And isn't that the best thing to have? Once you believed to have lost it for good! I know its not necessary over. But, hell, last thing dies the hope.

Take care,

Thomas :-)

10 comments:

  1. Thomas, thanks so much for sharing and for inspiring us. My now DH has an AA. Stories like yours give us hope and as you know hope gets us through day to day. I loved hearing how you were submitting a paper, watching a movie

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  2. I also understand scrutinising every little symptom or concern, I really do that with my DH. Yoga definitely helps me

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  3. Do you know if your tumor was IDH1 positive or p53 positive? Thank you!

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    1. tumor cells were p53 positive by IF, I have not looked at them myself though. Since I have not done any sequencing, I do not know about mutations. No info about IDH1, sorry. But thanks for pointing this connection out. just reading the papers. I was not aware, as I said , at one point I stopped reading and reasding on. Treatment is done. currently no decisions to be made. Just staying healthy and alive.

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  4. Thomas, THANK YOU so much for giving us an update!! Our son is at 2 1/2 years and doing excellent!! Your posts give us HOPE!!

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  6. This December 2014 will make 10 years since your diagnosis, and February 2015 will make 10 years since surgery. How are you?

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    1. Thank you for your comment! I did have a proper 9-year celebration with my girlfriend in February. But the 10th anniversary will need special attention (BIG Party? 5-star dinner with my girlfriend? Long weekend-trip to Morocco for two?. Besides that: I am still here and still working hard on my science, hoping to make a difference. Indeed it has paid off, finally the story got published! I wanted to dedicate it to Linda Liau, my miracle-neurosurgeon, but the journal does not allow dedications :-(
      Heres the link to the paper, should anyone be interested....no brain-tumor connection though, Leukemia (also a nasty disease). But tumorigenesis and leukemogenesis follow similar "narratives"...
      Its just another little piece in the puzzle, but we have some exciting follow-up data. Maybe in the long run, this will help......
      www.pnas.org/cgi/doi/10.1073/pnas.141294411

      Thomas :-)

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    2. Hi Thomas, and hurray for your anniversary coming up! The link to your article is not working... Perhaps it has changed?

      Best,
      Ingrid

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  7. Thomass you are a complete inspiration. I have read your blog many times and remain with the hope you give..My son is almost 2 years post dx with AA3.
    Celebrate well :)

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