Wednesday, 12:35 AM
High-Level Journal Summary: Today was my very first day of radiation at NCI. By chance status, this was also brain surgery day for brain tumor twin, Jill. This was her second brain surgery, but this time done in Stockholm, Sweden.
After a quick update on Jill, I provide a high-level explanation of some key items I learned today. What are these items? They simply give the top-notch view of how radiation is delivered to my brain, the deep amount of physics that go into the development of my radiation mask, and the massivity of the Gantry Machine (and lab) used to ultimately deliver about 60 seconds of radiation.
Understanding the above 3 items paints solid groundwork for future learnings about what can otherwise be a complex topic (radiation). Bottom line for today? Very, very solid day. I can only give thanks. I feel joy that we are underway, less than one month before we even knew about this fast-growing tumor.
Countdowns:
1.) Day 1 of hyper-fractionated radiation and low-dose chemotherapy at the National Cancer Institute (NCI).
2.) Meet with radiologist Dr. Kevin Camphausen on 1/18/08 to drill down on further information about the overall process. This will be an opportunity for insightful information on a timely basis.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday. In total, I have had a total of 11 SPS's in 2008 so far.
Website Updates:
Aggressive progress is now in place for Google searches within 38 Lemon and upgraded video features within 38 Lemon. Both efforts are being jointly spear-headed by Highwinds and Blue Water Media.
Why such aggressive efforts in 1Q08? There is much important content to share about Brain Cancer Awareness from a Patient's Perspective. Now is the time to get these 2008 critical functions in place so we can all learn and share even better.
Actual Journal: Hyper-fractionated radiation and low-dose chemotherapy began for me today at NIH. This is a very important day, to be certain. There is so much information that we are drawing out of the process. We are asking lots of questions and scheduling meetings with the most senior resources possible. Why? We need to be masterful regarding what is going on right now.
Brain Tumor Twin Update
However, before I give a high-level update about radiation at NIH today, there is an irony which finally came my way. Brain Tumor Twin Jill had her second brain surgery TODAY in Stockholm, Sweden (her last one being on 6/6/07 at NYU with Dr. Patrick J. Kelly). In other words, we were jumping into brain cancer full throttle at the exact same time. Just briefly, here is the update from Jill's mother, which is very much worth sharing. We are all on the same team, and Jill is battling hard. This text is verbatim from Carol (Jill's Mom).
First and foremost, Jill has come through the surgery and fears of speech loss seem to be overcome and the Dr. now is cautiously optimistic (upgraded from about an hour ago). She is miserably uncomfortable right now, but moving and talking! Dr. Dodoo explained what he did, the difficulty and the concerns, but so far, so good. She has a difficult 24-48 hours ahead of her as the anesthesia wears off and all the post operative tests are run. We are thrilled with what we have learned and observed thus far, even though, as I said she is not feeling good right now. She could not have been in a better place, in better hands, or at a better time. It's all divine intervention! The Dr.'s are amazed at the amount of tumor they were able to remove. More than they expected. We will not have pathology reports for several days, so now we wait until that comes in before knowing the next steps. I think she may not be so eager to leave this place as she was at NYU hospital. She has someone with her at all times.
The Dr. explained many things of what they encountered, surprised by some things, expectant of others. The fact that they removed so much more than they expected is especially positive, and in particular the tumor around the brain stem, creating space and relieving pressure on the midline of the brain which had shifted in accommodation of the large tumor mass. Now there is space and the concerns over swelling are less…worry still about hemorrhage for the next 48 hours.
Amen for Jill. Keep pushing, my dear friend.
High-level radiology information
Here are 2 photos which tell far more information than the MRI and drawing that I put together in the 1/15/08 online journal entry.
These are 2 photos which show exactly where the photon radiation will be pointed as radiation progresses. Granted, the map will change over time, but this is the starting point. (It is surprisingly large to me, to be quite open.) A strong photo of where we are on Day 1 is something I find to be tremendously insightful as to exactly what is happening and why.
There are 2 overlapping images on the side of this mask. One image is highlighted in the color purple, and the other image is highlighted in the color green. There is actually a 3rd and last area, as well. However, it cannot be seen on this mask since it is physically under the mask.
While all these markings seem somewhat crude on visual appearance, they are not. Over an hour of X-Rays were done this morning to ensure proper alignment of all these markers. This was done in a massive room (probably over 1,000 square feet in size), and the Gantry Machine used to deliver the radiation is one that costs well over $1,000,000. Many people were involved, from the most junior to the most senior people in the entire Radiation Oncology Branch (ROB) of NCI. This was a significant and extremely detailed effort, just to deliver the first dose of radiation.
Three big deliverables today
We solicited a large amount of data today. I have tried to reduce this to something quite simple, though. Here are the basics, all of which will be expanded upon in the future. I think that the following is a solid starting point for understanding "What the heck is radiation and how does it work?" This is my starting point for furthering that knowledge with the entire team at NCI.
1.) Start big, go small.
All the radiation will begin on the biggest radiation portion. Over time, the radiation will get tighter and tighter and tighter on the actual gross tumor. This is a very key concept to visualize as this process is done.
2.) High-level physics
In order to get the final mask constructed, it was worked by a number of people in the Radiation Oncology Branch (ROB). This was examined under detailed scrutiny, and each mask is highly individualistic to every single patient. The final 30 minutes of review, confirmation, and approval was done by the Branch Chief of ROB, Dr. Kevin Camphausen. (Dr. Camphausen is the close and trusted peer of neuro-oncologist Dr. Howard A. Fine, for whom I have the highest possible respect.)
3.) The Gantry Machine that is used to deliver all the radiation is a massive machine.
This machine is huge. It demands X-Ray doors that take 30 seconds to open. The room itself is massive. (It almost seems excessively massive.) To break things down, my particular radiation today got down to several simple radiation deliveries.
• LAO - Left Anterior Oblique
• LLAT - Left Lateral
• LPO - Left Posterior Oblique
• On each of these, there is a "CAX," which stands for "Central Axis." This is the center point where the radiation is pointed, and it is marked on the mask with a big positive sign (+).
• SSD's are also critical. SSD stands for "Source to Skin Distance." Basically, it is the metric which says how deep for the radiation to go into the left temporal lobe, in my case. This is critical information. It helps to better explain why the Gantry Machine which delivers the radiation costs over $1,000,000.
A good start
I feel so good that my dear friend Jill is making progress today. I am thankful for all the help my parents gave today to get this thing kicked off. I am esteemed by the positive attitudes of the direct teams I dealt with today at NCI. I am humbled that so many people are reaching out to help over the next 6 weeks (a massive outpouring).
In addition, I am so thankful that Christopher Corr and his family came and walked me hard today for exercise and fed me some protein based chicken. I am incredibly happy that James Fisher from the Inova Brain Tumor Support Group brought me a huge basket of delicious soup to eat over the next week. How can I not feel joy today?
I have an incredibly positive attitude going into all this. We are doing all we can possibly do, especially considering that one month ago right now, none of this was known. This fast-growing tumor news was only learned on 12/19/07, yet we are already done with brain surgery and starting radiation and chemo. This is real progress.
