Saturday, August 10, 2013

Weekend Update

It's been so long since I've written much. I have a bunch of random topics.

The first one is disgusting. If you're easily grossed out, skip the next paragraph.

Remember that sinus infection? I can't remember if I reported that it finally resolved itself back in the last days of July. But it took a while to drain and expectorate the dregs of it. A week ago Friday a day or two after most of it seemed to be cleared out, I coughed up an especially putrid looking (and smelling) brown-and-dried-blood entity. It was like the rotten corpse of the alien queen finally being expelled from the darkest reaches of my sinuses. That was the last I saw of the sinus infection. (Stay tuned, it may be returning. But I have antibiotics on hand in that case and at least it won't be happening on top of a bunch of other misery)

Cisplatin, the chemotherapy I was given in three high doses, has neurological side effects. The main ones I'm experiencing are loss of hearing and tinnitus (ringing in the ears). It feels like someone has turned down the volume on the world. And the volume level changes from time to time: quite suddenly things will get a little louder or quieter. It's also frequency specific. For example, I am completely deaf to the frequency range of the beeps emitted by most electronic devices. I can't hear my watch alarm at all, nor can I hear the beeping of our electronic thermometer.

Usually these side effects are temporary, or at least only partially permanent. Lets hope this mostly resolves because the magnitude of the loss is pretty significant (and has been since a couple of days after the first chemo dose).

We're in the last cycle of family support now. We've had wonderfully supportive visits from Big Sister, Little Sister, Los Parentes and now Wonderful Wife's parents are here - having driven from Washington State! Like Wonderful Wife and I they love a good road trip. At the beginning of treatment Big Sister insisted we arrange help as it would be very difficult to do it alone. Of course she was right. Especially with those relentless daily trips to radiation it was always nice to not have to worry about The Progeny being taken care of. I think The Progeny might have had an even more fun summer vacation than usual due to all the extra time with relatives.

The Mucous Wars continue and are the most annoying remaining side effect. (Hearing loss and inability to eat are also annoying, but less immediate). I use a mouth rinse recommended by Dana Farber that is water with salt and baking soda. Buffered saline in science speak. I rinse with it, literally, once every minute or two if I'm keeping up. If I do that, I can keep the mucous from migrating to my throat and requiring painful hacking to get out. But imagine having to grab a water bottle and a spit receptacle every couple of minutes all day long. It gets old.

I'm realizing I get a little over-anxious about it. To the point that I never lie down during the day for fear that I'll form a mucous collection that I'll have to get rid of. And the other night I was so anxious about the morning clearance process that I stayed awake until 4:00 AM avoiding sleep. That won't work.

Last night I was able to go to bed at a normal time and just go with the flow. It meant I woke up every hour when my throat and mouth were full of mucous, but I just got up and did a Level One Clearance (mouth and upper throat only - no hacking) and went back to bed. I was able to go back to sleep every time. And now the morning Full Clearance has not been as bad as I expected.

The Mucous Wars are expected to come to an end approximately two weeks after the end of treatment, plus or minus a week. Perhaps, just perhaps, it is already improving a bit. That is the next milestone for me - the ability to sleep through the night without clearing mucous.

Why do the side effects continue, and even perhaps get a little worse, after treatment is over? Remember how treatment works: it damages the cells' DNA. In many cells it will not damage it enough to kill the cell outright, but the cell will die when it tries to divide and it cannot replicate its damaged DNA. So I still have many cells that were damaged by my last radiation treatments last week but which have not yet tried to divide. Within two weeks of the end of treatment most of them will have tried, and died. Then real recovery begins.

I have a very strange relationship with my throat. I realized a few days ago that I have a mental model of multiple throats. When I'm painfully clearing part of my throat I imagine that I'll get to one of the other throats next. I don't imagine this on purpose, I just realized that that's how my brain is treating it. Too much pain for one throat, I guess.

The funny thing with me is that I can handle a fair bit of pain. It's other kinds of discomfort that drive me nuts: cramps, nausea, fever, itching, etc. Oh, and full intestines. And non-stop mucous production.

And then there's swallowing. I essentially stopped swallowing - completely - a few weeks ago. Mostly because it's painful but also because it meant swallowing mucous and during the sinus infection swallowing mucous made me vomit. Over the past week or so my involuntary swallow reflex has begun to come back. It surprises me so I'm taken aback by the sudden pain. But I'm starting to get a little used to it. I've even swallowed on purpose a few times just to check the pain level. It's bearable. I think soon I will start trying to swallow a few sips of water per day as the beginnings of regaining my swallow.

We met with a speech and swallow therapist twice and they make it sound very scary - if you don't do all these exercises we give you the 28 muscles and 53 coordinated movements involved in swallowing will be completely forgotten and you'll never swallow again! Not really but you get the idea. We had so much else to deal with that I didn't do any of the exercises but I'm ready to begin them now. Some are just stretching out my mouth since I haven't opened wide to put in food in a long time.

I had a few other topics but my energy has run out so they can wait for a future post.

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