30 December 2006
Saturday, 10:40 PM
High-Level Journal Summary: As the Holiday Season comes to a close, looking ahead to 2007. One of the main things I will learn in 2007 is whether or not my chemo treatment is still working. 1 year from now, I will know the answer, but right now, I do not know that answer.
Getting answers is not strictly a function of time, though. I have new contacts to Duke Medical Center that I made in December, so going there for a first time is in order. As well, going back to UVA is probably a good thing. Why? To get diversity of opinion about my current treatments for brain cancer and partial epilepsy. If there are points of disagreement for what I am doing now or what I should do in the near future, then these are the things to get on the table NOW for consideration. I want to be proactive.
Countdowns:
1.) Day 6 of 28 in my 16th 5/23 Temodar chemotherapy cycle. I have been fatigued throughout the day. I overslept 1.5 hours this morning and napped another 3 hours in the afternoon. I can still proceed and get things done, but I feel somewhat like a coffee drinker who has been forced to go cold-turkey. I'm dragging.
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.
Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 3 days ago. I expect these to reduce in frequency since I am able to eat normally once again. I no longer have to go for periods where I fast for 14.5 hours.
2.) I have now had 53 SPS's in the past 373 days (since 12/22/05). This is an average of 1 every 7.0 days.
Actual Journal: It's the tail end of the Holiday Season and I am feeling like crap. No, I did not drink to much eggnog. (I wish!) This is just the predictable outcome of taking 360 mg of Temodar chemotherapy medication every day from 12/25/06 to 12/29/06.
In this context, it brings up a good question. Are these chemo cycles doing any good for me any more? I know that this may initially sound like a silly question. After all, my visible brain tumor mass has reduced 1 cm in size from 10/31/05 to 9/15/06 from all the chemo I have been taking. So it has clearly been having effect.
New baseline MRI
However, it was noted in my 9/15/06 online journal entry that Dr. Howard Fine is now taking a very close look at whether or not this chemo is still working. Specifically, we established a new "baseline MRI" as of 9/15/06 to see whether or not my brain tumor is still shrinking or not. All future MRI's are being compared to my 9/15/06 MRI to see if the visible tumor mass is larger, smaller, or the same size. The 9/15/06 MRI is the new benchmark.
It is possible that my brain cancer cells will develop a "resistance" to Temodar over time, which would cause the Temodar to become less and less effective. That is what we need to watch and guard against as we head into 2007. After all, I would not want to be putting toxic drugs into my body for no eventual effect. Said another way, I do not want to be feeling like doggie do-do (the night before New Year's Eve!) all for nothing. This potential issue must be carefully studied.
Contacts from holiday parties
Well, to connect the holiday season with my 16th chemo cycle in a somewhat graceful way, it so happens that I talked with a friend of mine, Elizabeth Rutherford, at a yearly holiday party at the Rutherford household. All of us go back decades. Totally la familia.
As it happens, Lizzy's Uncle happens to be Dr. James McNamara, who heads Duke's Department of Neurobiology. I traded messages with Dr. McNamara the next few days and explained my diagnosis. We agreed that it made sense for us to meet when I get down to Duke because I am partially epileptic, which is an area that falls under his expertise.
As well, I had dinner on 12/13/06 with a drum corps friend named Chantal Weedman, and she had brain surgery at Duke on 8/14/06. (Dr. Allan H. Friedman performed neurosurgery to remove a hemangioblastoma brain tumor.) So, Chantal is working with the oncology branch at Duke right now and is a tremendous source of knowledge about what is going on there.
Where is all this leading?
I am firmly set on my current medical team. I am sticking with them and believe in them. However, that does not mean that I should not seek other opinions at this point. I have NEW questions that could stand some diversity of opinion. For example:
1.) What is your opinion on going more than 1 year on Temodar chemotherapy?
2.) What form of treatment(s) should I be considering after Temodar?
3.) What medications should I be taking to better control my seizures?
4.) What is your opinion of my current progress based on my protocol at NIH?
Those sorts of questions. Now, I have NOT yet been to Duke Medical Center, which is highly respected in the world of brain cancer research. I need to get an opinion of that institution and start to establish points of contact. Perhaps an initial meeting will lead to meetings every 6 months or so, just so that we stay in sync with each other. For all I know, I will have a treatment in the future that will be administered by Duke rather than by my current medical team. Such possibilities should never be overlooked.
And that gets me thinking. I should probably schedule a meeting with Dr. David Schiff at UVA (the University of Virginia). He expertise on Temodar is outstanding, and he has always provided excellent counsel. After 16 cycles of Temodar, it is probably a good time to visit him and get his input, too. The last time I met with him was on 5/10/06 when he traveled to Fairfax, Virginia to speak with patients and caregivers. He is a tremendous source of knowledge and an incredibly kind man.
What is the point of all this?
I'm not just looking for things to do to junk up my schedule. Hardly! I've just had enough time to more fully comprehend that I am entering somewhat new territory in my Temodar chemotherapy treatment. As such, I want to stir things up a little bit.
Will all these professionals nod their heads in agreement about how things are proceeding with me? If so, great. But, what I am looking for is where they disagree on things. When there are points of conflict or disagreement, THAT is where I like to drill down for more detail. THAT is where the issues are. THAT is the stuff I need to understand and have a personal, defendable position.
Being proactive
In the end, reexamining my medical strategy will help focus efforts in 2007. If there are new issues in 2007 -- which there most likely will be at some point -- then I want to be on the front side of them rather than the other way around.
So, visits to Duke and UVA are going to be on my agenda in early 2007. Nothing may come of it or something may come of it. The only way to know is by taking action, asking lots of questions, and making adjustments if and when needed.
