7 January 2007
Sunday
[Journal not posted until 9:50 AM on Monday since I am on vacation.]
High-Level Journal Summary: After a weekend of vacation, preparing myself for many activities in January:
- Getting my next MRI at NIH.
- Preparing for the 2/27/07 FDLI Colloquium.
- Researching more about how long to take Temodar chemotherapy medication.
- Officially beginning the brain tumor book.
I remain positive and optimistic about how my treatments for brain cancer are proceeding. Part of that fuel comes from my daily activities to monitor my health and set myself up well for each cycle of Temodar chemotherapy. Another part of that fuel is from my longer-term view on what is happening.
The daily logistical items and the longer-term optimistic items are both on my plate, which I consider to be part of the territory of having brain cancer. Happily and without complaint, I refuse to do anything less than this -- because I know the stakes are high. A very interesting start to 2007.
Countdowns:
1.) Day 14 of 28 in my 16th 5/23 Temodar chemotherapy cycle.
2.) Inova Brain Tumor Support Group Meeting on 1/9/07.
3.) Quarterly meeting with my local neurologist, Dr. Amy Stone, on 1/9/07. The purpose of this meeting will be to review the results of my 11/29/06 meeting with my primary neurologist and epileptologist, Dr. Steven Pacia.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 1 day ago.
2.) In 2007, I have had 1 SPS so far.
Actual Journal: I rarely have times like this, where I step away from my focused preparation for my next chemo cycle in favor of a few days of vacation. It was good, though. Massage therapy at 1 PM, wandering through parks, going in and out of art shops, having pizza from a local shack that knows how to serve it up, meeting complete strangers for dinner and conversation, soaking in a jacuzzi until properly cooked, spending quality time with a dear friend of 22 years. I feel very relaxed.
I fly back home on 1/8/07 and immediately get back into the fray. There are some big things on my plate when I return, all of which I am anticipating in different ways. In no order:
1.) My next MRI at NIH is on 1/17/07 (Wednesday). Then, I have that MRI reviewed by Dr. Howard Fine on 1/19/07. Will there be enough data to determine if my visible brain tumor mass has shrunk since 9/15/06 (my new baseline MRI)?
2.) Preparation for the 2/27/07 FDLI Colloquium is in full gear. (See 12/21/06 and 12/28/06 online journal entries.) As recently stated by the host of this event, "...the issue of access to unapproved drugs is now clearly a front-burner issue for FDA and the pharmaceutical industry. Our Feb. 27 Colloquium should serve as an important forum for the discussion of the important issues surrounding Abigail Alliance and access to unapproved drugs." Preparation for participating in this discussion will be very interesting, especially as I garner input from members of my immediate medical team.
3.) The issue of how long to take Temodar chemotherapy medication will be addressed head on. In a proactive effort, I feel it is time to explore this issue beyond the bounds of my immediate medical team. (See 12/30/06 online journal entry.) The logistics of all this need to be coordinated.
4.) Per 12/17/06, it is time to officially begin the brain tumor book, an idea that was born on 10/14/06 at the opening of the Brain Tumor Series of art by Rosemary Feit Covey. While this will be a book based on brain tumor art, world-class medical perspectives, and my perspective as a brain cancer patient, it all starts with logistics as this team is coordinated and pulled together. That time has arrived here in January of 2007.
January is filled
Some of the above events are, quite obviously, directly related to my brain cancer. Getting and MRI and researching how long to take Temodar are linearly related to my overall treatment. No surprise that these things are on my list.
Being on an FDLI Panel and helping with a brain cancer book may seem a bit more abstract to some. However, as a brain cancer patient, I take a different view on them. Being involved in discussions that could impact how patients access unapproved drugs (i.e., drugs that are not yet FDA-approved) gives me a longer-view perspective in my overall treatment of my brain cancer. And helping to write a book about brain cancer will be incredibly therapeutic. As such, these are activities which are also very important to me.
Thoughts as I return home
In the end, I remain positive and optimistic about how my treatments for brain cancer are proceeding. Part of that fuel comes from my daily activities to monitor my health and set myself up well for each cycle of Temodar chemotherapy. Another part of that fuel is from my longer-term view on what is happening (and what I can do to impact things in my future).
The daily logistical items and the longer-term "optimistic" items are both on my plate, making all this more than a fulltime job. But, this is what I consider to be part of the territory of having brain cancer. Happily and without any complaint, I'm just going at it full throttle. Frankly, I refuse to do anything less than this -- because I know the stakes are high.
So it is that I return from a weekend of vacation, more ready to take these things on than had I stayed at home working on these things non-stop.
