How have I been?

• Physically, the new treatment is not as taxing as the previous therapy. I’m maintaining weight at 150 pounds. I’m too skinny, but I’m strong and feel good mostly.
• Mentally/Emotionally— It’s a strange time for me. I’m not ready to die but I give the matter due consideration. I have ambitions and aspirations still. But honestly, death doesn’t scare me in the slightest. I’m not giving up by any means. My thinking is extremely positive even though I do venture into darkness from time to time.
• Spiritually – I’m reluctant to blog about my beliefs regarding spirituality because it’s a very personal thing. What I believe, feels right to me. There’s not much point in sparking religious debate here. People of varying faiths support me. I appreciate and respect all support.

New Treatment

I have completed three days of my new chemotherapy (Vorinostat and Temodar). The new program is very regimented. I take Vorinostat for seven days, then take a break for seven. I take Temodar every single day though. There’s also a variety of pills I take to offset side-effects.

• Despite the strict timing of meals and taking drugs, it’s easier to take pills at home rather than go to a facility to receive IV infusions.
• Side-effects are also less severe than the previous therapy of Avastin and Irinotecan. But my previous experience with Temodar let’s me know that I CANNOT miss taking anti-nausea medicine or there may be Hell to pay.

Next Steps

I get a CT scan in early January. We’re hoping to see bleeding stopped. This will reinforce the decision we made to switch chemo-therapies. Later will come an MRI, where we will hope to see tumor reduction.

Thanks for reading my update. That was it. What is written below, could just be the incoherent ramblings of a man with a brain tumor who thinks he knows better than others.

Every man takes the limits of his own field of vision for the limits of the world.
― Arthur Schopenhauer

This has been a recurrent theme in my experiences and interactions lately.

Just before publishing this post, I did a search to see how many people were diagnosed with GBM in 2012. I stumbled upon a comment to an article that threw me into a tail-spin. It began,

Positive thinking is all fine and dandy, but it’s not going to save anyone’s life.

Well of course I know that I’m not going to be cured by positive thinking alone. The comment continued,

…positive thinking contributes nothing to the end result.

I replied sternly to the comment, which can be read here: http://www.news-medical.net/news/2006/01/02/15159.aspx?reply-cid=f2b13d48-f48f-440a-bff7-424b3861c6ff#id_f2b13d48-f48f-440a-bff7-424b3861c6ff
It’s the comment by HopelessTomorrow on Oct 21, 2012.

Holistic

I have heard it said many times that the body can heal itself of ALL maladies. It requires serious conscious effort  such as nurturing the body, mind and spirit properly. Only part of recovery is medical treatment. There are other components that most of my medical doctors don’t seem to care about.

I have been listening to guided meditations every night lately. Sometimes I listen to relax. More often I listen to healing-centric meditations. I think everyone could benefit from meditation.

I am taking a lot of supplements now. Previously Duke advised that many supplements would interfere with the efficacy of chemo. I don’t refute that, but I am now also under the care of Dr. Bhatia of Atlanta Center for Holistic and Integrative Medicine. She’s a medical doctor also well-credentialled in holistic medicine. She was on the Dr. Oz show recently, which I suppose speaks to her credibility. She prescribed several supplements that will not interfere with chemo and will keep my immune system strong (and my chakras balanced). There is some level of assurance because of Dr. Bhatia’s high profile. But I really miss Lisa, my previous acupuncturist/practitioner of Chinese medicine who recently moved out of state. (Thank you, Lisa, for caring for me along my journey.) I may have to venture over to Buford Highway and find a wise, old Chinaman.

Yoga has been a great healing tool for me. It keeps my body strong. It calms my mind. I think everyone could benefit from yoga, too.

Drugs

I’m prescribed lots of drugs that MIGHT help the cancer and they generally make me feel very bad. They hurt my body. So doctors prescribe more drugs to help cope with the side-effects. One drug that has been marginally effective is Marinol, which is synthetic THC (one of the cannabinoids in marijuana). It helped a little bit with my nausea and lack of appetite. But I have been to places where medical marijuana is legal and I know first-hand that real marijuana is much more effective than synthetic. The real deal has many more cannabinoids that make real marijuana a much better option than whatever drug companies concoct and the FDA allows me to use. Unfortunately I live in a state where marijuana is not legal even for medical use. I hope that anyone opposed to legalization of marijuana can take the word of those who suffer from terminal cancers, HIV, chronic pain and PTSD that marijuana is a helpful, healing, natural herb to be embraced — not a dangerous drug. Instead of paying a lot of money to drug companies for barely effective, synthetic medicine, real help could be both affordable and available to me.If that’s not good enough, then look at the science. Research has been done for decades and around the globe about how marijuana can be used for more than treating symptoms — it could be a primary treatment. I don’t want naysayers to have to get cancer in order to reach the level of desperation to look into the facts of how marijuana provides real hope and healing. But I also don’t want my freedom and health to be restricted because of ignorance and greed. If legalization comes up for vote where you live, please help. I don’t want to move away from my home in Georgia. I don’t want to break the law. I want to be free to do what I know can help me. Regulate it, tax it, enact reasonable laws that balance public safety and liberty. I would be happy to debate the issue with anyone not convinced.

Welcome to the Club

Last week I was contacted by two people newly diagnosed with glioblastoma multiforme. Brain cancer hit me out of the blue. It’s catching others by total surprise too — appearing suddenly with no cause with which to attach blame. There is a grueling, life-changing journey ahead of these people. I fear our society is in need of big changes that just aren’t going to happen until things get much worse for many more people. If I could appeal to my friends to make one change, it would be to start with food. Be mindful of what you eat — of what you feed your children. Food and eating right could be so simple. Unfortunately, money, greed and power have convinced us over time to nourish our bodies with crap that is making us fat and sick.

Love,
Ken