Sunday, April 13, 2008

...and TWENTY-EIGHT!

Those who know me well know that my ultimate favorite movie of all time is Gone With the Wind, but once in a while I swerve into other movie obsessions.

My latest, Amadeus, is a throwback to my college years, when it was fairly new and we had to watch it for music appreciation class at BYU. I loved it back then, and it recently came back into my nostalgia movie lineup. So now when I am staring at the ceiling in the middle of the night I keep reliving Mozart music from the movie. I just tell myself that the music is therapeutic to my brain (hopefully counteracting the deleterious effects of sleep deprivation).

There is a scene in the movie where Mozart is trying to persuade the emperor of Vienna to permit him to proceed with his opera, "The Marriage of Figaro." He describes a unique part of the opera, and asks the emperor to guess how long he can sustain it:

"Guess! Guess, Majesty. Imagine the longest time such a thing could last, then double it!"

Along with the music, that line from the movie keeps resonating in (what's left of) my mind. Because if we take the best-case median survival of a GBM patient at the time I was diagnosed (14 months, based on the Temodar drug study) --then double it -- and add one day -- that's where I am! Twenty-eight months and counting. This experience has been masterfully composed by Someone much better than Mozart.

Twenty-eight months, and all I have to worry about before my next MRI is this nasty flu and a blocked ear and a record streak of insomnia . (Think of how long a person can go without sleep and double that, too, I guess -- you'd think I'd have another book written by now!)

2 comments:

Wendy S. Harpham, MD said...

Hi Krista,
Yes, a wonderful movie! And wonderful news: 28 months AND COUNTING.

Forgive me if you've already blogged about your insomnia, but have you explored therapies for this. Our bodies - including our brains - need sleep for restoration. And there are lots of effective approaches to resolve insomnia, some of which are non-pharmaceutical.

I had serious insomnia troubles during one of my earlier courses of treatment. Oh how long the nights were.

Whether it was due to the stress of recurrent cancer and a poor longterm prognosis or due to the medications I was taking - or both, visits to a sleep specialist taught me some techniques that got me through a very tough time. My sleep difficulties are now resolved. On the occasional night that I can't fall asleep (e.g. changing time zones while traveling; unexpected stressful day), I use the old techniques, and they work like a charm.

Wishing you a happy 28th and many, many more.
With hope, Wendy
www.wendyharpham.com

Anonymous said...

Dear Krista, we haven't written to you before, but I wanted to let you know that I found your blog in about November, right after my husband Cris, who was diagnosed Aug. 1, 2007 appeared to have recurrent GBM and couldn't go on to the 21/28 day trial for Temador. Your blog has given him upbeat hope at times when it is hard to be upbeat. I read through your blog for specific times you've alluded to his trials and tribulations. Just wanted to thank you and tell you you're working hard for yourself and others! Cris is now on the Avastin/irinotecan combination that Duke published great results from in October 2007. I think you may have been on a similar course with Avastin from my perusals of your blog.
Keep us your fight, your children are precious and lucky to have you for a mom. Cris is fighting the fight for our two adult children and our precious 17 month old granddaughter. They make a big difference in what you can tolerate, as you so humorously pointed out in this past blog.
You're in our prayers,
Cindy and Cris Leibner