UPDATE FROM TINA MAUDSLEY: All, Ken passed away on June 20th in the morning at his home with me. I haven’t had a chance to fully edit the content to reflect this but am updating with new posts from a caregiver’s perspective. Please let me know if you have any questions or if I can help in any other way. Thank you for reading Ken’s blog. I hope that it helps.
My name is Ken Maudsley. I was diagnosed with a stage 4 (terminal) brain cancer, Glioblastoma Multiforme (GBM) in August 2011. Initially, I wasn’t sure what the goal of this blog would be. Now, having maintained it for over a year, I realize some reasons for it:
- To share my journey — how I’m doing (Updates).
- To share what I think (Thoughts).
- To document my treatment (Treatments).
- To share utterly useless information (Stories)
TO DO: I hope to consolidate my medical decisions onto one historical page so it’s easier to glean the choices I made.
This site should not be regarded as a valid resource for treatment information – only opinion and entertainment. This situation I am in transforms my life on a daily basis, so I can’t promise that the content will always be relevant or appropriate for all audiences.
I was 41 years old when I had my seizure, which was on August 11, 2011. I live in Atlanta, Georgia. My wife, Tina, is taking great care of me.
On August 11th, 2011, I had a seizure. I had never had a seizure before. I had not been having headaches or any other suspicious symptoms. I was taken to the ER at Emory. An MRI revealed a tumor in the right temporal lobe of my brain. Doctors removed it and determined that it was Glioblastoma Multiforme (GBM), a stage 4 cancer.
The median survival time for a GBM patient is 14 months (at least it was when I was diagnosed). This leaves hope for living much longer as well as the possibility of not as long).
Quest for information
Friends and family (way more people than I could have imagined) snapped into action, becoming over-night experts on brain cancer, treatment options, nutrition and clinical trials. There is an overwhelming amount of information available. Without their support, I don’t know how I could have made any decisions.
I decided to go with the standard of care treatment: chemo (Temodar) and radiation for six weeks. You can’t just do this and expect to beat the odds, so our other treatment actions include:
- Clinical trials – Experimental drugs and treatments that are really for the benefit of future cancer patients, but there is still a chance I could benefit, too. After lots of research we settled on an immunotherapy trial ICT-107 for it’s promising results to date and lack of dreadful side effects.
- Nutrition – I’m exploring the path somewhere between macrobiotic and living foods diets. Organic is now very important to me. I temporarily quit eating meat. I missed booze and sugar for a while, but the body and mind adapt. It’s really not that difficult to eat healthy when your life is on the line.
- Alternatives – Eastern medicine, acupuncture, yoga, meditation, green teas, herbs, supplements, as well as metaphysical intentions and laws of attraction.
- Hope and Belief – These are powerful tools for everyone to have in their arsenal when confronting insurmountable odds.
By the way, my (Western) doctors didn’t give much credence to diet except to warn that claims of supplements and herbs are not clinically proven and may interfere with their drugs.
The list of thank-you cards I need to send out is stacking up high. So I want to at least say thanks here to everyone who has been helping me through their actions, thoughts, prayers, curses, etc. (Especially my wife, Tina!)