Tuesday, August 16, 2022

New Life (again), New Continent (again), Old Problems

Hello again! 

First of all the update on the dreaded MRI (last post): "unchanged", "re-demonstration of large, fluid -filled resection cavity, without evidence for recurrence" Hard to believe for most experienced neuro-oncologists, but I am still riding that curve. After 17 years. (surgery, February 7, 2005 my second birthday.)

OK, but now a little about the real life events: I survived the COVID-crisis so far without catching the bug! I got all the vaccinations of course, as a cancer survivor with 14 rounds of Temozolomide  I probably still belong to the "vulnerable" group (possibly compromized immune system). Not sure if that still counts after so many years (treatment was in 2005, now its 2022). but here I say: "better safe than sorry"

Brain-related aftermath still existing, although nobody acknowledges that ("oh , that I have too") nothing too serious,  sometimes irritable forgetfulness (Where did I put that key? ) mostly small things  but I realised, I seriously depend on my "little helpers" to get things done (laptop, iPhone) I have lots of pop-up-reminders. In general, for a hole in my brain that size its amazing how relatively well I "function" (if thats a purpose in life).

So the latest development, after becoming unemployed at the beginning of the COVID-19 crisis, I was stuck in searching for a new position in science (You remember that I do cancer research):  WE MOVED BACK TO CALIFORNIA!

The last push towards this came (of course) from my wife, who after joining me in Hamburg, where she worked on a project at the "Institute for Traditional Chinese Medicine" for a while and then, after a three year intermezzo in a "real science" institute (her words) in Dortmund, (3 hours train-ride away) ended at the same level like me: being unemployed. And if you know something about Germany, although an "Old" country(44.5years average!! 4th highest in the world),  ageism is abundant and a HUGE hurdle in finding a job.  So us, both being in our 50's found ourselves trapped in a job market unresponsive to our applications (YES: In Germany a photograph AND a Date of birth are expected in a CV!!!)

Bottom line, when nothing moves, one has to move oneself. (sounds deep but is a simple necessity) My wife, through a mail to a SD scientist, managed to get the attention of a big academic/industry institution, which (to our own surprise) made us attractive offers and promised to pay part of the moving expenses, no surprise, we were  flattered and came. after a nightmarishly stressful moving-out experience, we finally have re-established ourselves in San Diego -AGAIN-. Goodbye Germany!

sounding all bright and hopeful, could not stay too long, obviously. In the meantime both of us are out of a job -AGAIN-. different reasons, though, for me it sadly may be connected to the deficits I mentioned above. For my wife it was, because she discovered that her project was based on an artefact leading to misinterpretation of the data. so while i am "let go" her project is officially "on hold" (Means no pay and termination after three months. 

Now we are stuck again, but here we know people and will find something. But here is where my story comes back in. I will need to see that I find something less demanding (VERY difficult to admit to myself), a fast-paced industry environment is probably no longer for me.  Although I am still full of ideas and love nothing more than tackling with complex problems.

This is the task ahead: Find my place in the world -AGAIN-. I have a kid to raise. THAT is a complex problem too. But for me less easy to solve than the consequences of "epigenetic mis-regulation of the Bmi1-gene in tumorigenesis".... ;-)  (My "last" submission, still unpublished, even possibly related to brain cancer) 

But I am ALIVE!!


OK, thank you  if you read this sometimes, drop me a note! Its always good to see that I am not writing a monologue to myself here.


Take care!

(T.)


9 comments:

  1. Thomas,
    Very happy to read your post -seventeen years is awesome!
    It sounds like you have no significant deficits - self-checks and self criticism are part of this new road we are on.
    At the same time this illness changes us, and one of the challenges is to accept that tolerance for stress and fatigue are part of the change.
    Four years out, I have learned to live with the fact that my career going forward is not what I thought it would be. I was past 60 when I had my seizure, and I have always been grateful that I didn't get this in my thirties or forties.
    My doctor warned me early on that I would need to change some habits to live with this - no more all-nighters, no working to exhaustion, more regular sleep, better nutrition and "work/life balance" (whatever that is). You seem to have managed to do this well enough that you are still here - hats off to you for that!
    On your move back to the US and your job situation, don't be too hard on yourself - the post-pandemic recovery here has been full of bumps and potholes for many, many professionals. That you and your wife were able to land jobs in California applying from Germany is actually pretty amazing, and suggests to me that you probably will get over the subsequent bumps fairly quickly and find other opportunities - being in the same time zone will help!
    Your story has been an inspiration to me since I was first diagnosed - Ich wünsche dir alles Gute!
    Chris

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    1. Chris, thank you replies like yours show, that the blog idea was worthwhile. BTW, my wife go a job offer this morning!! Yay! Where are you located? Stay in touch and keep up the good fight! Oh, some bad habits I have stayed with me despite of the diagnosis: an appreciation of Single Malt Whiskys. though in moderation. Life needs some "guilty pleasures" after all....

      Best, Thomas :-)

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    2. Hello Thomas!
      First, congratulations on your wife's job offer - I hope that turned into a job, and that something has turned up for you.
      Also, happy new year - we made it to 2023.
      My news is a couple of good scans since October - same kind of radiologist's way of saying no regrowth that you got.
      It's hard to believe that I'm now in my fifth year - nowhere close to your run, but I'll take it. I'm in Boston - had my surgery at Brigham and Women's, and my treatment at Dana-Farber. I couldn't ask for a better or more dedicated team.
      I heartily endorse a small glass of something you like (single malts are a great pick) - as you say, moderation.
      All the best,
      Chris

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    3. Chris, always good to hear from you! Hey, ...maybe it is the single malt, that keeps us alive so long.....;-) I just had a sad glioma story in my family, not sure if I want to bring that one up as a post, my brother-in law just passed away from GBM a week ago. Bad news is what you find plenty when browsing the internet. Moments like these (family dying) are a bleak reminder, how helpless we all are in the face of this thing.
      But no weakness! that THING must die. Again, and crying out loud: TO HELL WITH CANCER! Chris, stay healthy! and stay in touch! No all-nighter for me today (still do it sometimes, but I pay the price, if I do. Goodnight!
      Thomas

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    4. Dear Thomas,
      I'm so sorry about your brother in law. As you know GBMs are the worst version of this beast - I have a few friends doing ok 4 - 5 years out with GBMs, and one awesome guy who has gone 12 years (2 surgeries) and is still doing ok, but they are outliers. The bleak reality is that this cancer is heartbreakingly individual.
      Bless you and your family, especially this week.
      Chris

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  2. And keep taking your Keppra (or whatever anti-seizure meds you are on) - seizures are not helpful. Very best wishes to you and your family for the holidays and 2023.

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    1. Thank you. I am taking it religiously. Levetiracetam, its a generic for Keppra In Germany I was shuffled between a few brands. never had a seizure and never noticed any difference.My last seizure was around 2008. I fell off the chair while pipetting an experiment. Like a light switch, I was gone, no prior sensations. Nothing. Its scary so I do not want that to happen to anyone near me.Taking the med twice a day is my absolute must. I have biked in busy hamburg to work daily (30 minutes one way, in traffic and I went FAST.) So having a seizure was absolutely not an option at ALL. I could have died in traffic in an instant.

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    2. My "Keppra" has always been generic made-in-India Levetiracetam - works fine, and cheap!

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  3. Dear Thomass,
    Happy New Year - I hope you and your family are healthy and doing well.
    I am coming up to the five-year anniversary of my surgery (Dr Alexandra Golby, BWH). Five years ago I couldn't have imagined being alive this long.
    Thank you again for your blog. It was a real boost to me and my wife as I was getting ready for the surgery.
    So, we keep living our lives and trying to do some good with this extra time we've been given.
    All the best,
    Chris

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