The Beginning of the Next Phase

11/1/11

I began the day with a visit to my acupuncturist. We decided to do some energy work to help harmonize and align my chakras. (Or something like that — this is all new to me.) It was amazing. I’m experiencing things that I once would not have believed. I think I made a good decision adding this to my treatment regimen.

Then we flew to Chicago to begin the ICT-107 clinical trial. A four hour flight delay prevented us from getting there early enough to enjoy the evening, but at least we made it.

11/2/11

We had an early morning appointment at Rush. This visit involved taking a lot of blood for various tests to ensure that I still qualify to participate. If so, I’ll travel to Chicago weekly this month for vaccine injections. The first MRI will be on November 21. This will be the first check to see how things are going since my surgery. Doctors do not expect to see any tumor regrowth this early.

I feel good about participating in this study but I occasionally get angry about being in this situation. As we were leaving the hospital, I shared an elevator with a woman with no legs. She maneuvered her wheelchair with agility using prosthetic hands on arms that ended below the elbow (and did it with a smile). It was an attitude adjustment for me. Although my condition is still considered terminal, I realized that many, many people suffer worse and endure more than I.

We flew back to Atlanta.

11/3/11

We met with the oncology team at Emory today. At the end of November, I will begin taking a double dose of chemo five days a month for the next 12 months.

We then attended a brain tumor support group. Today there were about six other people with stage 4 GBMs. We learned that the Southeast has a higher number of brain tumors than other parts of the country. The National Cancer Institute is doing an epidemiological study to determine if diet, exercise or genetics play a role. I qualify for the study and am a prime candidate because I have a brother who does not have brain cancer. They would want him to participate too. Basically, you confidentially answer a bunch of lifestyle questions and send in some toenail clippings and saliva. I have to admit that I’ve never been extremely philanthropic, but this seems like a responsibility.