Sunday, August 18, 2013

Que Fatigue?

Did I mention that somewhere about now I'm supposed to go through a long period of serious fatigue?

I'm not sure what they're talking about.

I have been a little sleepy. Friday I slept through my IV infusion at the Farber then went home and fell asleep for a few more hours on the sofa. Yesterday I think I slept about 10 hours during the day. In addition to sleeping all night (albeit with mucous-clearing every 1-2 hours. Today I also dozed all though my 2-hour infusion at the Farber plus a few more hours at home.

I can lie down at just about any time and fall asleep.

As I hinted in my last post, I have this impression that my readers will think that now that treatment is over my life is breeze and I'll just nap a little less every day and in a week or two I'll be back to work!

I wish.

Remember that the Mucous Wars have not changed. A month of dealing with it has taught me some coping skills, but the mucous gods can still find curves to throw at me. The post that introduced the Mucous Wars was "Reader Discretion Is Advised", written almost exactly a month ago.

The mucous is showing some minor signs of changing and perhaps abating.

Four nights ago I suddenly started sleeping almost all night, in 2-4 hours stints and sometimes as much as 9 hours total. That was a huge and welcome change. The first two nights it happened it was relaxing! I would get up to clear mucous but go right back to sleep each time. Then two nights ago it turned into a stressful all-night serial dream that incorporated the mucous. I cant remember the other details except that it was one of those dreams that keeps returning every time you go to sleep and all you want is for it to stop.

Last night I had a different serial dream that involved the cast of "Pawn Stars".

Perhaps tonight I can just sleep without any serial dreams.

It makes me realize I can't remember dreaming at all for a long time before that. It's not uncommon for patients like me to develop serious sleep apnea during the Mucous Wars. Perhaps I've been suffering from it and didn't know it. Wonderful Wife says I don't thrash that much, although I do stop breathing for brief periods.

So, anyway, we were talking about how I spend my time...

Managing mucous is a huge part of my day. If I want to have maximum comfort, I'll sit with a bottle of rinse solution (contains salt and baking soda) and a spittoon in my lap. For a spittoon I've been using a cocktail shaker that the family has deemed shall never again be used for a real cocktail. If I rinse, gargle and spit at least every 3-5 minutes I can keep up with the mucous and my mouth and throat won't feel coated and the accumulation of thickened mucous deeper in my throat will occur more slowly. But you can imagine how difficult it is to keep up a routine like that for hours on end.

If I get focused on anything else like writing blog posts or reading email or paying bills or whatever, I might only rinse every 15-30 minutes. By then I'll have a coating of mucous everywhere, and when I do rinse it will take some work to get rid of the backlog. If I nap for an hour or two, you can extrapolate.

Sometimes the mucous production seems to slow down for reasons I don't know. I might actually get a break of an hour or so. If I notice it, sometimes I'll seize that moment for a nap.

At the beginning of the Wars, mornings always involved a violent conflagration. Over time, the parties seem to have reached a truce under which the morning clearance can take place on a slightly more relaxed and less violent schedule. But that means at least a couple of hours of repeated trips to the bathroom sink to rinse, gargle, hack and spit with slightly deeper layers coming up over time.

The deepest layers, which feel like they are way down at the bottom of my esophagus (although I think that's not anatomically possible - I think we're really talking just above my larynx), come when they will. Usually unexpectedly and always violently. Apparently the only way to dislodge that mucous is with strong retching, which will also involve whatever happens to be in my stomach at the time. And transporting that mucous up and out of my throat is not straightforward. Because of its stringiness it will only move a small distance at a time. Meanwhile, its presence in higher and more sensate regions of my throat leads to more gagging and would lead to panicked breathing if I hadn't long ago learned to force myself to relax during these episodes and mete out the violence as I can handle it. If I'm lucky.

This is usually the worst 20 minutes of my day and leaves me with a bleeding throat and a splitting headache.

In addition to mucous management, nutrition, hydration and drug management take a longer than normal. I have drugs I have to take at least 30 minutes before I eat, then set a timer to remember to eat on schedule, then more drugs to take on on a full stomach (or at least as full as mine ever gets via tube feeding). I have other drugs that are taken at specific intervals so I have to track those. Just getting in a can of food takes about 30-40 minutes. I'm supposed to get in 6 cans a day but due to the Intestine Wars the most I've achieved in the past week is 5 cans and most days it's more like 3. Then I also have to try to get in a couple of liters of water, Gatorade or Pedialyte.

I also try to get out for a walk or two, and I might join Wonderful Wife for a short errand just to get out.

I read a little bit of online news and check email and facebook a few times a day. But pretty much throughout treatment I haven't been able to focus on reading for very long at any one sitting. One would think it would be a great time to read a bunch of books but it hasn't worked out that way.

You can understand that when the radiation effects on my mouth and throat finally subside and the Mucous Wars come to an end, my life is going to change substantially.

Then the goal will switch to learning to eat through my mouth again.


  1. I am awful at hacking up, were you always good at it, or with all this practice are you going to be great at it the rest of your long life, do you think?

    What are you doing all your scheduling with? I use alarms on my phone way more than a normal person would and I find it great. alarms to get up, alarms to get my bus, alarms to go to lunch, renew my library books, you name it. I wonder if that would help you out.

    Get better already please.

    1. I was probably pretty average at hacking up. I do not wish to use these skills for the rest of my life.

      I'll post an updated version of the paper spreadsheet we use to track medicines, food and water intake, bowel activity, etc. It has evolved over time.