Sunday, 10:40 PM
High-Level Journal Summary: Detailing what is changing in the coming week at NIH/NCI/ROB. There are a number of important things which will be happening, all of which seem heightened to me and important.
1.) Radiation schedule for hyper-fractionization.
2.) Radiation schedule for single fractionization.
3.) Radiation amount is changing, too.
4.) Dosage totals for the Wednesday through Friday.
5.) I have various coverages from friends and family over the coming week to stay at my place.
6.) Will my hair stay in place?
7.) Personal Health Care Insurance
8.) Time with Dr. Camphausen.
Each of these are discussed in detail. For patients and caregivers, these may be of particular interest. If not, the detail intrinsic may be of importance.
Countdowns:
1.) Day 12 of low-dose chemotherapy. Chemotherapy continues every day, without stop.
2.) Day 8 of hyper-fractionated photon radiation at the National Cancer Institute (NCI). Two rounds of photon radiation on 1/25/08 gave me (an approximate) grand total of 19.2 Gy (of 60 Gy total).
3.) On 1/28/08 at 8:00 AM, Day 9 of hyper-fractionated photon radiation will continue at NCI. Two more rounds of radiation will be delivered at 8 AM and 2 PM (ET).
4.) NOTE: It was one month ago today that I had my 12/27/07 brain surgery. How time has flown since then. We are making solid progress in ways we must.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday. In total, I have had a total of 15 SPS's in 2008 so far.
Website Updates:
Website updates were provided throughout pages 154, 155, and 156 of the Messages tab. While I have not been able to go back in time to provide updates to the Messages in early January, these updates are ones that I consider important. The interaction is what I thrive upon.
Actual Journal: I am tired. But only after a full day on the ranch here, at home. There are a number of things that could be detailed, many of which are important to note. Here are some of the details that came out of this weekend. They set the stage for what is about to come during this week -- worth detailing for consideration.
1.) Radiation schedule for hyper-fractionization.
• Monday: Hyper-fractionated radiation #17 and #18 (8 AM and 2 PM). This will bring us to an approximate total of 21.6 Gy (out of 60 Gy total). This is roughly 36% of the overall radiation total.
• Tuesday: Hyper-fractionated radiation #19 and #20 (8 AM and 2 PM). This will bring us to a total of 24.0 Gy (out of 60 Gy total). This is roughly 40% of the overall radiation total.
2.) Radiation schedule for single fractionization.
The actual and physical aim of the radiation schedule is different will be different on 2/1/08, when the overall radiation is at 46%. At that point, the aim of the radiation is tightening by 1 mm, from the outside moving in (see picture below). Basically, as of 2/1/08, we are chasing after the "Edema Section" of the following MRI, when we are starting at the 46% radiation mark.
3.) Radiation amount is changing, too.
We are moving from the outer section that says "Extra 2-3 centimeters overbuild" to the section that says "Edema." This "new aim" will begin only when we hit the 46% radiation mark (which will be after the close of business of 1/31/08).
The bottom line is that the patient will get a total of 1.8 Gy each day with single fractionization instead of 2.4 Gy each day with hyper-fractionization. It is a matter of physics that is calculated and confirmed each day by a team of 4 Ph.D.'s before it can be executed.
4.) Dosage totals for the Wednesday through Friday.
• Wednesday: Beginning of single fractionation #21 (8 AM only for 15 weekdays). At this point, a different number of Gy will be presented at each single fractionization. The exact amount for the next 15 cycles will be approximately 1.8 Gy, which is higher than the 1.2 Gy that was delivered on each individual cycle during hyper-fractionization.
This will bring us to a total of 25.8 Gy (out of 60 Gy total). This is roughly 43% of the overall radiation total.
• Thursday: Single fractionation #22. This will bring us to a total of 27.6 Gy (out of 60 Gy total). This is roughly 46% of the overall radiation total.
• Friday: Single fractionation #23 (and focus on Edema section for the first time). This will bring us to a total of 29.4 Gy (out of 60 Gy total). This is roughly 49% of the overall radiation total.
5.) I have various coverages from friends and family over the coming week to stay at my place.
Why? To watch my overall health status carefully. If something were to change, then immediate help would be needed. We are especially watching the changes in my profile as we decrease my Decadron (a steroid used to control brain swelling) and my Phenobarbital (used to control Simple Partial Seizures). Both of these drugs change in this coming week and are extremely important to watch tightly. Here are the people spending the night in the coming week.
• 1/27/08 (Sunday): Mom
• 1/28/08 (Monday): Dad
• 1/29/08 (Tuesday): Dad
• 1/30/08 (Wednesday): Mr. David Rutherford
• 1/31/08 (Thursday): Jeanette Bressi
• 2/1/08 (Friday): Mike Rutherford.
6.) Will my hair stay in place?
I was told that I should expect for my hair to start falling out of place this weekend. However, this has not happened at all. It will be interesting to see if this happens or not. Honestly, I do not care. Bring on what happens. I'll take whatever it is. I do not care.
7.) Personal Health Care Insurance
Jim McIntyre and my Mom will be getting together on Monday (1/28/08) to discuss this insurance for me. This is the week to get it done. I will have Personal Health Insurance selected by the end of this month, which is important. Why? Because my Group Health Insurance expires 2/22/08. Before 1/31/08 is the time to purchase Personal Health Insurance by the end of January and save money in the process.
8.) Time with Dr. Camphausen
In the meantime, we are getting our arms in and around what is happening. This will be an important week for us, once again. We are getting some high-level assessments, but there are more to obtain.
As long as we can get some time with the Chief of the Radiation Oncology Branch, Dr. Kevin Camphausen, I will be satisfied. Our questions have mounted, and we should be able to speak more on the same language as him.
In closing
I consider this to be an extremely important and focusing week. In the meantime, it is time for another great night of sleep. This is the time to start the coming week.
