Friday August 31 to Sunday September 2

Over the past 3 days, we’ve had several visitors and in between, launched into extensive reading of the cancer treatment resources and planning what we’re going to do. In addition, the twice daily IV infusions are now going smoothly with my handling all the setup procedures and Susanne doing the attaching, the purge syringes, and the IV connections to the PICC tube that was installed.

On Friday, Ruth Twaddell came by and did several errands and prepared a wonderful dinner for us. On Saturday, her husband Ban came by and washed, vacuumed, and waxed our car. We feel so blessed to have such wonderful friends.

On Sunday, my mother, sister, and brother-in-law came from Pennsylvania. They brought lunch, and we spent about 4 hours together.

1. My mother really needed to see me to assure herself that I was OK. One of the resources we had obtained was a large document entitled the “Moss Report on Adult Brain Cancer”. I found the introductory letter so positive and inspiring that I read part of it to her and gave her a copy. It became clear in talking with my mother that there was confusion and extra consternation in the family about the Stage/Grade of my diagnosis. What the doctors have indicated is that my diagnosis is a Grade IV tumor, based on the high level of cancerous activity in what was removed. They also indicated that classification of Stage, where Stage IV means that cancers have often metastasized, or spread to other organs or throughout the body, does NOT apply my type of brain tumor.
2. My sister is a healing arts practitioner (homeopathy, ortho-bionomy) so we had extensive conversation with her about the researching we were doing.
3. My brother-in-law likes to be active, so he gladly fixed our guestroom door so it closes and trimmed a tree for us..

In the researching/planning we did the following:

1. As you can imagine, we have accumulated a large amount of information from various people. We reviewed all of it and created classifications of 1) Diet, 2) Complimentary Alternative Medicine (CAM), and 3) General Glioblastoma. This helped to bring some order to an overwhelming pile of paper.
2. We purchased the Moss Report for Glioblastome Multiforme, as mentioned above. This is a 500 page report that summarizes and evaluates the conventional treatment approaches as well as the alternative treatment and support approaches.
3. We had a conversation with Susanne’s long-time friend, Brenda Maxwell Zagrafov, who is a family physician and incorporates a significant amount of alternative medicines in her practice. A key understanding I came away from this conversation with is a critical proviso when looking at research reports from conventional and alternative sources. Her observation is that all conventional research results will be stated in the most conservative manner possible and will generally also make very clear the side effects and warnings. The alternative research results will not necessarily be under such constraints and are generally far less researched. This came up because some of our initial reading was making us very leery of the conventional approaches. Brenda’s view is that in the future the natural approaches will be dominant, but for now in our imperfect world, often the best treatments available are difficult ones, such as chemotherapy and radiation. And…whatever we can do to pair alternative and nutritional care with these, is wonderful.
4. We scheduled a 2-day visit at the Block Integrative Medical Center in Evanston, IL We expect to get second opinion from them on the appropriate treatment as well as guidance on the supplemental/dietary approach to use.

Unfortunately, shortly before bed my incision sprung a leak of sorts, putting Susanne into more intense nursing mode than she was prepared for. The saga of challenges with my head continues…