Another lesson learned

It seems there’s an unending amount of learning to do when dealing with a very serious disease.   Although we’ve been trying hard to stuff Peter with calories, and he’s more or less maintaining his weight, he’s become quite dehydrated.  This is largely because his radiation-induced very sore throat makes it really difficult to swallow.   We’ve tried all sorts of things, magic mouthwash, lozenges, painkillers, but nothing has been truly successful.

So yesterday’s visit with the radiation oncologist led to an IV infusion of saline and dextrose.   The initial intent of the appointment was to discuss radiation procedures and Peter’s thoughts on the matter.  Note:  everyone who knows Peter at all will recognize that Peter will always come up with a change, possibly an improvement, a new angle on something, and wants to discuss it – he’s still Peter!

Well, we never did discuss that, as Brian Czito (radonc doc) focused immediately on Peter’s condition, the side effects, how he’s coping, etc.   Several hours later, we emerged from Duke after the infusion, and with Peter feeling somewhat better.   Brian emphasized that we could return anytime for another infusion in the radonc clinic, and we almost certainly will in the next day or two.   And coincidentally, the sore throat is improving.  Brian said it would likely do so around the time of our appointment, and more or less on schedule it did!

So here’s the lesson:  hydration is so very important.  Dehydration can increase fatigue, and generally raise havoc with the body.  And someone in Peter’s condition can get dehydrated extremely quickly.   We monitor his pulse rate regularly, which is a leading indicator for dehydration, and indeed Peter’s pulse rate has been quite high, and his blood pressure quite low – the body copes in ways which seem strange to a lay person, and possibly to an expert as well I’d bet.

So everything related to Peter’s condition is on a very high alert status.  We both watch everything, but sure enough, while we knew Peter was dehydrated, we didn’t think to ask for IV help.  Yes, it had been mentioned before, but now it’s in the active arsenal, so to speak.  All the docs we’ve seen (and there have been many, including of course Dan George and now Brian Czito has emerged as an important figure) have all spoken out strongly on both the need for Peter’s physical rehabilitation and their belief that he can achieve this, which is enormously encouraging.

I think I need some tools.  There are disease issues, side effects issues, weight issues, hydration issues, physical strength issues, and the ever present state of mind issues.  The interaction between all these things is extremely complex, needless to say, and I spend a huge amount of time trying to put together the meaning of x pain or x symptom, and every new piece of information adds both to the complexity and also to the possible linking together and further understanding.   As I tell all the docs, they’re the medical experts, but I’m the Peter expert.  I’m also a very good problem-solver, and will gnaw on a piece of information until I can get it sorted out, if indeed it can be.   There are a couple of things I’m gnawing on now, which I’ll report in due course.   And, in a true gnawing manner, I’ll badger (!) the docs with my observations and thoughts until they take notice or give me satisfactory information.

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