Treatment Starts: Monday, October 1

The first treatment was smooth and uneventful. I have developed what I think will generally be my morning routine around the 6 weeks of chemo/radiation treatments:

1. Eat breakfast before 8 AM to allow 2 hours, per pharmacist recommendation, before taking the chemo pill.
2. Listen to the 1/2 hour tape from my hypno-therapy session starting at about 9:30 AM to get me fully connected with my “PLAN”.
3. Take the chemo pill at 10 AM welcoming it to do its healing work. When we had originally spoken to the oncologist about the timing relative to the radiation treatment, he indicated that it did not matter. When Susanne pointed out research literature that indicated the optimal timing was 1 hour prior to the radiation, they agreed, and we may have helped with refining what they will be recommending to future Glioblastoma patients.
4. Depart for the hospital for 11 AM radiation appointment.
5. During the radiation treatment have the beautiful musical rendition of the "Long Healing Prayer" from the Writings of the Bahá’í Faith playing. I had neglected to mention during the post on preparation for radiology begins that I had played this CD during the MRI and the technician was so taken with it that she asked permission to make a copy. The site I’ve linked to above contains a free download of the music and shows the words. The artist, Allen Tyrone Johnson, also has audio gift cards available.

Each Monday, there will be a meeting with Dr. Einstein, the radiologist, and his nurse, Kathy. Susanne will be my driver that day to participate. The nurse basically goes through a set of questions to determine if any side effects are present. After she left, we reflected on how problem-oriented the questions are and that there are none to determine what positive state I’m in. We are now devising an alternate list of questions for her to ask me (the doctor has approved us working on this list), and we’ll post it next week when they are final. We had an excellent discussion with Dr. Einstein:

1. I explained to him that I am doing visualization work to support the radiation treatment and that seeing exactly where they are targeting would be useful to me. He showed us a detailed mapping of my head and showed exactly where they are targeting. This targeting is based on analysis of all the MRI images taken over the last few weeks, including back to prior to the surgery so that it takes into account the full extent of possible cancer penetration. Based on these images, we agreed upon where I would be visualizing a layer of my white blood cells forming to surround it and remove the cancer cells.
2. We inquired about the results of the MRI scan that was taken on September 20. He indicated that the swelling (edema) was significantly reduced and that there was no visible evidence of tumor re-growth. These are both very good pieces of news. You will recall that my visualization, prior to the surgery, was building a cocoon around the tumor so they could remove it in one piece. They/we were successful, so I’m not 100% convinced that there is anything left in there. The doctors have repeatedly assured me that, given the nature of the tumor, there are microscopic tumor particles that, at this point, would not show up on the MRI. Untreated, these will quickly grow into another tumor.
3. He was very pleased with the progress on regaining the use of my right foot. He was very interested in Susanne’s theory about the role of the non-prescription anti-flammatory called Wobenzym I’ve been taking for my sprained ankle and asked what it was. He indicated that continuing to take it during radiation would be acceptable. Because it appears to have reduced brain swelling, it may reduce the future need for steroids (yay!).
4. We discussed care of my scalp and hair. The standard recommendations for products to use to protect both don’t make the best sense to us, so he has agreed that we can use alternative products instead of theirs. It’s amazing to us that cancer patients are given/encouraged to use substances containing petroleum byproducts, formaldehyde, various chemicals, and products that promote itching.
5. At the end of our meeting, he complimented us on the proactive, positive attitude with which we are approaching the treatment and to keep it up. We told him that it was our understanding that more “difficult” and questioning patients tend to live longer. That prompted a good laugh!

Today was the first day I was able to work since July 19^th, and I put in a productive 3 hours catching up on my email and getting organized to get back in the saddle. Felt good!