Monday, May 2, 2016

Brain cancer is...


Darrell offers comic relief as we sit down in our suite for today's blog.  Gina's inspiration is at work perhaps.

...throwing some good news our way.

Thanks, everyone, for sending all your positivity our way for this morning's appointment.  It worked!


  • The scan looks just as it should post radiation.  There is no new growth in the tumor location, and no trouble spots elsewhere in the brain.  This is expected, so close to radiation, but the news still could not have been any better. (Darrell points out that the last time a doctor scanned his head and read the new scan, he was admitted to the hospital on the spot.  He was worried about that happening again.)   
  • The tumor rim is thicker, and there's some fluid (water--swelling) around the location.  These are also expected as a result of radiation.
  • Dr. Cloughesy asks for Darrell's next scan to be in two months--not one as I earlier thought. The pattern will be that Darrell gets his scan in Fullerton/Yorba Linda on Thursday/Fridays and then heads back to Dr. Cloughesy on Monday mornings...every two months.  Dr. Park might ask for more frequent scans.  We'll keep you posted.
  • The maintenance phase only lasts a year (that is, double dose of chemo 5 days out of every 28).  It's too toxic to continue longer than that.  I didn't know that.
  • I did ask again whether medical evidence points to anything other than the chemo that Darrell could do during maintenance phase.  Dr. Cloughesy confirmed that current medical knowledge shows that nothing else that works better.  We don't feel discouraged by that; it actually feels encouraging  to have an expert with extensive knowledge draw that conclusion.    I spend so much time reading, chasing leads from my novice's perspective that I feel like I'm heading down rabbit holes.  So it was good to feel confident about our current treatment path:  Temodar and the huge power of Team D. 
  • We also got reassurance about Darrell's speech.  It's easy to read too much into any little thing.  The UCLA team confirmed that it's normal for some days to be harder than others and that continued practice (Yea! Seuss!) and therapy (Sigh.) will help. 
Team D., we feel reverent* about all that's good in the world every day, But today it feels GREAT to experience the emotion of relief.  Another first. 












*Thanks for today's word, Ginger.

1 comment:

  1. Cindy' Stewart's co-worker also had same brain tumor. She is 3 years post treatment. Cindy said she did a lot of herbal treatment,(she is Chinese.) redcjs@att.net

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