11 May 2008
Sunday, 8:30 PM
High-Level Journal Summary: A second day of sustained pain. It started at 3 AM with raw hunger. It took an hour just to eat a small amount. When I woke again at 6 AM, my Mom tracked down a material which I could sustain me better. This material, called Ensure, was pretty easy to consume, especially at extremely cold temperatures.
This 3rd chemo cycle may be cumulative more than anything else. That needs to be determined. Either way, it is painful and causes me to think of ways we can make the next one better. This one feels borderline dangerous to me.
Countdowns:
1.) Day 6 of 21 in Cycle 3 of Carboplatin + VP-16 chemotherapy.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago.
2.) In 2008, I have had 61 SPS's in 132 days. This is an average of 1 SPS every 2.2 days.
Actual Journal: Another terrible day of chemotherapy. However, we are not sitting around just complaining about it. Instead, we are trying to fix this problem. It is bad enough that an immediate solution is needed.
I woke at 3 AM so hungry that I was in pain in the middle of my back. I spent an hour just trying to eat 6 ounces of yogurt. I was able to get it down, but it was difficult to do.
Ensure
As soon as the sun rose, I called my Mom and told her of my deep hunger but inability to eat -- quite a contrast. She sent me to the store to get a product called Ensure. It has many healthy ingredients, all of which I need so badly. I've had 4 of them so far today. I should have 1 more later this evening.
My Mom also called our "doctor on call" to explain how badly I am doing right now. One of the revelations we got was to have all liquids at the coldest levels possible. My God, this works. I have everything at ice-cold levels now. It makes such a marked difference for me. I can take liquid foods when they are that cold as opposed to any other temperature. Amazing.
Feeling awful
I feel a little better than Saturday, but only a hair so. I feel so bad that I wonder what drug I am allergic to right now. I also wonder if we should move to a 28-day chemo cycle instead of a 21-day chemo cycle. Frankly, what I am going through right now is a bit too much to endure for a several day period.
I'm a tough guy and can handle a lot, but this is material to the point that I cannot take it every 21 days. I mean, it is pain for most of a 24-hour day. It makes me want to spread out this pain rather than have it so compressed. Things must change -- we must learn how to make this better next time. This current pain is way too much. I suppose that sounds like a "complaint." All I know is the word "honesty."
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