Let’s not be hasty
My title, “Let’s not be hasty,” has a two-fold meaning.
On one hand, my local doctors don’t seem to be in a hurry to get me into the office to discuss my next steps. I have an appointment in two days, but I was hoping for sooner. After all, my tumor has gotten quite large and I haven’t been doing any treatment since Tuesday. Perhaps I’m over-estimating the urgency of the situation.
On the other, maybe I shouldn’t write-off NovoTTF just yet. I spent some time speaking with tech support today. Seems the device registered very many errors in the 33 days I was using it. I justified to myself that the error beeps the device chirped out throughout most days were normal due to heat and moisture and what not. The tech assured me that although errors were occurring, I was still getting treatment. I should have just replaced one of the parts as they forewarned me I might need to do.
Since I’ve not been prescribed any other treatment now and have a couple days wait before meeting with my oncologist, why not just put the headgear back on, replace the cable connector, use a replacement TTF device and continue the treatment? So that’s what I did today — and what do you know? — the device hasn’t indicated any errors at all. It’s encouraging but I wish I had done this 32 days ago. I’m concluding that maybe I spent the last 33 days undergoing less than optimal treatment. No point dwelling on what can’t be changed.
On this day
100 years ago today, Julia Child was born. Tina treated me to dinner at Babette’s Cafe where the menu was Julia-inspired. I suppose we were also commemorating the one year anniversary of my first craniotomy. This time last year, I suspect I was surrounded by family, completely lit on Dilaudid and Percocet, and annoyingly flirting with nurses. Tonight, I’m very happy.
5 responses to “Let’s not be hasty”
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Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
Ken I am so sorry to hear this bad news … listen ; you got to try EVERY possible treatment ! Praying won’t help (sorry but I am an agnostic …also a disease but one which is not contagious LOL!!) So please contact the people I told you about in Germany or the UK …. I am sure that they will help you on your quest for recovery ! http://finance.yahoo.com/news/northwest-bio-expands-worldwide-production-133000666.html
About Avastin… I had a very bad impression of it from an article in the New York Times. Totally unjustified impression, as experience proved. No side effects except a nosebleed, once. Other people on the brain tumor boards have reported a similar lack of side effects. It’s not the big bad bugbear the media has portrayed. And since it’s only given every two weeks, you would probably still be able to manage that trip to Africa.
Thanks for sharing your experience.
Hi Ken!! My name is Lady. My husband passed away about a year ago from GBM. I’ve been reading your journey. We were living in Atlanta and I know your wife Tina, who was a partner of my husband in his job. I don’t know if you would like to read about dichloroacetate, or if already you did it, but I want to tell you that you are an amazing person!! Please keep fighting for your life!!! Don’t give up. You deserve all the things that you want!!
Indeed Lady : in my own country DCA is considered as a viable option my many oncologists (sorry Ken I forgot this…) But I do remember that it was in Canada that this treatment was developed.
http://stm.sciencemag.org/content/2/31/31ra34.abstract