9 January 2008
Wednesday
[Journal not posted until 8:35 AM on Thursday morning. This is for the second day in a row because of a medical road trip that tipped our schedules.]
High-Level Journal Summary: High-level notes about the fast-paced, racing meetings in New York City, all of which moved us closer to when radiation and chemotherapy may indeed start. With all that has happened in just 48 hours, we are without doubt on the fastest path humanly possible right now for what needs to happen. That, in itself, it quite assuring.
Countdowns:
1.) 7 days until radiation begins at the National Cancer Institute (NCI).
2.) Meet with my local oncologist Dr. Dipti Patel on Fairfax, VA (1/10/08).
3.) "Simulation" work at NCI on 1/14/08 to get my screen constructed for radiation. This will be a several hour process.
4.) Begin 6 weeks of radiation and chemotherapy on 1/16/08 (Wednesday). My 12/27/07 surgical scar tissue must be healed and some swelling must have gone done by then. Once that happens, a photon beam (i.e., NOT a proton beam) will be used to apply this radiation. One other critical detail is that this radiation will be applied twice per day, 6 hours apart. The chemotherapy will be applied as a "radiation sensitizer," helping the overall effectiveness.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago. I had a total of 7 SPS's in 2008 so far.
Actual Journal: The activity during my trip to New York City had been far more vast, expansive, and involved than expected. We are all pushing extremely hard. My Mom, Dad, and I have met with the following people and done the following things:
1.) Met with Neurosurgeon Dr. Patrick J. Kelly.
2.) Met with Pathologist Dr. Steven V. Pacia.
3.) Gotten my stitches removed from my 12/27/07 brain surgery. Things look in very good shape.
4.) Increased the Decadron medication to reduce swelling after brain surgery. I now take 6 mg of Decadron every 6 hours, and this regularity makes a positive, dramatic difference.
5.) Got another post-surgery MRI at NYU to see how things are progressing. Results from surgery look well.
6.) Radiation and chemo needs to begin very quickly. We are not wasting time and are making excellent, proceeded progress. This is how battles like this are eventually won.
More later
At this moment, I only have a few moments to share. I will update this online journal entry later and share much more about is happening at this rapid pace. There is important information I need to digest and think through correctly.
In the meantime, I have a quick breakfast to eat, after which I need to be on a train to Virginia (where I live). There, I will meet with my local oncologist, Dr. Dipti Patel. I must say, this has been one of the fastest-moving months of my entire life to date. Yes, I am younger than many people, but this is marking some new spots in life. I'm just incredibly thankful for so many great people and so much great help.
More important details later as they become available.
