She has a cycle.
I have a cycle.
The two sometimes come into conflict.
Her cycle is based around the effects that the chemo drugs have on her system. After an infusion she usually has 2-3 good days. She’s not feeling the effects of the infusion yet, and things go along pretty well. We can plan events, do things, go places. But the exact length of this part of the cycle is variable, and after it comes a crash.
My cycle during this time is guarded watchfulness. I try to be upbeat and fun and ready to do almost anything she wants to do, while at the same time looking for signs that she is starting to slide downhill so I can intervene as quickly as possible with change in diet, change in activity, and more fluids. The earlier I catch the decline the easier it will be and the sooner she bounces back.
After 2-3 good days she enters decline. This lasts about a week. When she is in decline her energy level falls to practically nothing, her appetite becomes weird and unpredictable – particularly regarding salt, where her sensitivity can fluctuate wildly day by day and sometimes hour by hour. She spends a lot of time asleep or reading, except for the times when her body is itching from the caustic chemicals and she finds it hard to rest.
During this time things are very unplanned. I make frequent trips to the store to get her food she wants and I have to monitor her liquid intake closely. When she is near the bottom, I set two-hour alarms and make her drink a mixture of seltzer water, pedialyte, and flavoring syrup to stay hydrated, and to help flush the chemicals out of her system. This is also the most stressful time for me. It’s hard to see her sick like this. My sleep schedule, never all that regular in the first place, is usually blown completely to hell within the first couple of days of her decline.
After a week and a half, she starts improving. Her appetite gets better, and her energy level begins to rise again. She becomes more alert, more attentive, and more active. At first, of course, it’s very minor stuff – not sleeping as much, not feeling itchy, more focused. By the end of week 2 she is doing better, and the following week before the next infusion she has improved considerably (though not, sadly, back to the level she got to after the previous infusion. That’s how it works – each round there is some deterioration).
This is where our schedules clash the most. I am dead tired by this time. I haven’t been sleeping well, I haven’t been eating well either. During the previous part of the cycle I lose my interest in food, and am perfectly happy cramming empty calories into my mouth to shut my body up if its easy. Now all I want to do is sleep, and I am cranky and irritable. I am a bad caretaker at this time. But this is the exact time, when I am at my low ebb, when she starts feeling better and wants to start doing things during the short period she has of feeling good. So she wants to go to the movies, see friends, play games, etc. and I want to curl up with the cats and sleep for days at a time.
It seems to me that knowing this, the best thing for us to do is to enlist the help of some friends like D&S or M&S to supply her with the needed outings until I can get back on my feet and feel rested. She needs to get out. It’s important to her outcomes. I need to get my energy back. It’s important to my outcomes.