11 September 2006
Monday, 10:10 PM
High-Level Journal Summary: Realizing that my days of fatigue during the physical consumption of Temodar chemotherapy medication have moved from 2 heavy days of fatigue to 6 heavy days of fatigue. Heavy fatigue has tripled in the course of the past year.
This immediately causes me to apply the brakes even harder in my life. As hard as that is for me, I know that such short-term decisions are for longer-term gains. What I sacrifice over the next year is based on my belief that successful Temodar chemotherapy treatment can lead to many more high-quality years, in return.
I've placed my bet, and I just have to make daily decisions that are consistent with what I understand and believe about my brain cancer treatment.
Countdowns:
1.) Day 8 of 28 in my 12th 5/23 Temodar chemotherapy cycle. For the 2nd cycle in a row, I felt fatigue linger into day 8. I am not quite done with feeling the heavier impact of this 12th chemo cycle.
2.) Bi-monthly Perfusion MRI at NIH on 9/15/06. Review of MRI with Dr. Howard Fine is scheduled on the same visit.
Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 6 days ago.
2.) I have now had 43 SPS's in the past 263 days (since 12/22/05). This is an average of 1 every 6.1 days.
Actual Journal: I am in my 12th chemo cycle right now. As it turns out, this is the 2nd chemo cycle where I have felt strong fatigue on day 8. Before cycle 11 and cycle 12, this heavier fatigue would not bleed into day 8. I would take a nap on the afternoon of day 7 and would wake feeling markedly different. And when day 8 hit? I felt like a completely different person. I almost got to the point where I expected this to happen.
But in the past 2 cycles, I have noticed that things have begun to change. I was told to expect this over time, but 10 straight cycles without major changes was quite a streak. I can now feel the gears beginning to shift.
Reacting to changes in my chemo cycle
How am I reacting to these changes in my chemo cycle? Good question. It is actually making me look at everything I do much more closely -- and I was already giving a lot of scrutiny to which activities I could do and could not do. I don't have everything figured out right now, but I find myself looking at things through the following filters:
1.) My available energy during chemo is finite.
2.) What I need to do comes before what I want to do.
3.) Fatigue on days 3-8 is now a reality. It has moved from 2 days of heavy fatigue to 6 days of heavy fatigue. Heavy fatigue has tripled in length since I first started chemo.
4.) Days 9-28 are now all about getting ready for the next chemo cycle. Rest, exercise, and nutrition can help lead to a better chemo cycle. Ignoring these things is a huge mistake.
5.) Saying no to some things is going to be quite difficult -- especially since it means saying no to people and activities I love.
Conclusion
My eyes are burning as I type these words. I am exhausted and it is not even 10 PM. Classic signs of heavy fatigue, to which I must concede. Maybe the lesson here is simple and short and to the point.
The lesson for me? All this is temporary. Good chemo results in the next year will help lead to even better treatments in the future and a better chance of turning brain cancer into a chronic illness rather than something that sounds so lethal.
So, I need to make the short-term sacrifices now so that I will have more opportunities in the future to attend to the people and things in my life that feel so neglected at this point. Those words are difficult to even type, let alone digest. But, I know in my gut that these are words I would preach to others in my situation.
