One Day At A Time
Two weeks ago, we desperately wanted the treatments to start. Now, we desperately want them to end.
Don't misuderstand. We know that this is the only medical chance for a cure and aren't about to opt out. However, the chemo and radiation are really zapping Dalton, and the feeding tube is a real bummer. Even though he is taking three different anti-nausea meds (including the good stuff, Zofran), he is still suffering from constant, general quesiness. Plus, he is so physically exhausted that he is sleeping about 16 hours each day. In fact, almost the only time he isn't sleeping is when he is giving himself one of the 3 daily syringe feedings or 5 daily medication doses.
I know that some people can maintain a fairly high quality of life while thery are on chemo. And, maybe, if it weren't for this stupid tube, Dalton would be able to as well. Honestly, though, we haven't yet found a way to work the feedings/meds into a workable routine that would allow for any kind of life outside the house. Let me give you an example of a normal day for Dalton:
6am - Wake up, disconnect from overnight feeding, flush tube, push three different meds through tube, get dressed, go to radiation
7:45am - Get radiated
9am - Push two more meds through the tube and connect to 1 hour daytime feeding
10am - Sleep
12pm - Push three more meds through the tube and connect to 1 hour daytime feeding
1pm - Watch some tv
2:30pm - Push three more meds through the tube
3pm - Connect to last 1 hour daytime feeding
6pm - Push five meds through the tube and connect to the twelve hour overnight feeding
10pm - Temporarily disconnect and push two more meds through the tube. Reconnect
This is not a whine, but the truth is that the only way for Dalton to get through this right now is by taking it one day at a time. He is completely depressed, and the thought of doing this for 5-7 more weeks is way too much to handle.
There's not too much more to tell except that I asked for a prescription for a sleeping pill to use on night when Iain stays with Grandma. Since Iain was spending the night there on Monday, I decided to get the RX filled and try to get a good night's sleep. The prescription was for Lunesta and I picked it up without getting the consultation. Later on, I settled into bed and reached over to grab myself a little shut-eye help, only to discover that my prescription wasn't really mine. It was for Tania Hardiq who was apparently battling with a serious bout of Excema. Oh well, even if she's not able to treat the problem, at least she can sleep through it.
posted by Tricia @ 7:46 PM
3 Comments:
On the nights that you have Iain, don't feel sleep is a total loss. A prescription for Elavil--a low dose of 10 or 20 mg, taken at night-- can help you fall asleep yet still wake up in the middle of the night when Iain needs you and also wake up in the morning feeling refreshed, not groggy.
Just a thought.
Hi you two-
I know you will see Austin tomorrow, and I so badly wish I could come, too. You continue to be in my thoughts daily (if not hourly!) and I know your strength, love, and humor will get you through whatever the next few weeks bring your way. Be strong!
xoxo
Chandy
Tricia and Dalton,
I heard the news a few weeks ago and haven't known exactly what to say. But I've continually checked your blog to keep undated. I must say, as difficult as things must be - it is very refreshing to see that you are able to keep an upbeat and often times, humerous outlook.
Please know that my thoughts and prayers are with you all - throughout the day.
Karrie Napier (Alpha)
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