Tuesday, 11:00 PM
High-Level Journal Summary: A packed day, in ways that are unique and unusual. While I had two more rounds of hyper-fractionated radiation at NIH/NCI/ROB, along with low-dose chemotherapy, there were new aspects to the day which are intended to help us all.
Today, Google was launched for 38 Lemon. Today, more video was worked on for 38 Lemon. Today, a well-known dance company called BosmaDance visited my home (along with a film crew and others) to start a serious dance project on brain cancer.
These are not usual events, by any stretch of my experiences in life. I do know that this fits into a larger life scheme, though. This is all about sharing what we learn, with specific events shared among other people. In addition to the great medical information we learn, all elements combine into a "toolbox" which allow people to access information in ways which are most meaningful to them personally.
Countdowns:
1.) Day 7 of low-dose chemotherapy. Chemotherapy continues every day, without stop.
2.) Day 5 of hyper-fractionated photon radiation at the National Cancer Institute (NCI). Two rounds of photon radiation today gave me (an approximate) grand total of 12.0 Gy (of 60 Gy total).
3.) On 1/23/08 at 8:00 AM, Day 6 of hyper-fractionated photon radiation will continue at NCI. Two more rounds of radiation will be delivered at 8 AM and 2 PM (ET).
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. Once again, I woke too quickly in the late afternoon and had a 30-second light SPS. It was brief and yet another reminder to wake gently when I physically rise from my bed. In total, I have had a total of 13 SPS's in 2008 so far.
Actual Journal: How would this sound? "Life is interesting!" It sounds trite beyond control. However, life is interesting -- and in ways that are new for my experience.
I usually do not say too much about what is happening until things are fully delivered, but there are several items that are fully in progress which bring lots of energy into daily living. Examples? Fairly easy for me to list several examples of positive things coming from brain tumors to help us all in more expansive ways. I will intentionally keep this list shorter than it actually is, in reality.
1.) Google was launched internally with 38 Lemon today.
This is a process, but Highwinds is leading the charge on making this happen, with Blue Water Media leading the implementation of this technology. At the very top of every page of 38 Lemon, there is a Google box. This can be used to search across the entire 38 Lemon website for any materials. Extremely powerful tool that exponentiates.
Does this sound like a lot of work? Well, it is. The key is having access to the correct people at Google and then being able to correctly launch what is a powerful tool.
The power of this media is needed given the amount of content on 38 Lemon. Now, over 3 years worth of material can be far better scanned, found, understood, and utilized. It is important to note that this Google search is all internally for 38 Lemon. It should dynamically shape the overall use of this tool worldwide, only helping all of us to try to better communicate. It is powerful and completely enriching.
2.) Highwinds continues to roll out their video software for 38 Lemon.
Again, this is a process which takes time, but it opens up numerous other possibilities for sharing the process of brain cancer and what is happening in this world. It is like having a brand new door on what can be shared. It can help initiatives such as next.
3.) A thrilling meeting happened this evening at my home with BosmaDance, of all things.
Meisha Bosma, head of BosmaDance. Meisha visited my home this evening with a number of very creative people, including a film crew, members of her dance company, and artist Rosemary Feit Covey.
Rosemary has worked in partnership with BosmaDance before, so the ideas for sharing more about brain cancer in metaphoric, artistic ways are already in progress. The reason? This is how we can help each other through all this, in one more way that is expressive to different people in this world.
Busy day
Yes. What a day. I can physically feel the impact of two more rounds of radiation. There is not doubt. I welcome each and every solid round of radiation. We are doing precisely what we need, even having the opportunity to speak with Dr. John Mansueti once again.
There are many important notes that my Mom, Susan Miller, and I were able to extract during a fairly compressed meeting. However, we are proving our ability to get information on a rapid pace. As such, our time with our medical team is well spent, to which we are rewarded with each opportunity.
But in the end -- wow!
As mentioned, I feel the physical impact of this day. At the same time, I can see the broader dynamics at work. In quite simple terms, it is something like this:
1.) The 38 Lemon team is several dozen dedicated members at this point. Yes, several dozen. It amazes me.
2.) Different people have taken on different roles.
3.) Certain people have specific leadership roles. The most encouraging thing is that these roles are geared correctly. How so? Helping us all. Our intent is to best replicate and share the things we learn, all along different and accessible paths.
4.) The ultimate goal in all this? To provide numerous ways for people to learn about a disease which can kill. There are many important diseases out there, all of which I highly respect. We happen to be focusing upon brain cancer, but perhaps that becomes a bit of a "universal language" at that point. That is the intent. It is all an intent to help many rather than just help a single individual.
Wiped out
So it is that I must go to bed once again. I have the grace and luxury of help from so many people. I have people who stay at my home each night, who drive me to the National Institutes of Health, who feed me such fabulous food, who teach me about radiation, who spiritually help in unanticipated ways. What a beautiful time in life.
And now? A full night of sleep is called. My body is calling hard, and I must listen. Wise, I do believe.
