read my what?

We all know the first Bush president made the phrase famous “read my lips.”  If you don’t believe what you are hearing (that I’m saying), read what I’m saying.  It certainly got the point across.  For the past 10 days, I’ve been wanting people to read my mind.  Or maybe my facial expressions, or body language.  Just read something so I don’t have to talk so much.  Maybe what I should be transmitting is: please, just think with me.

I don’t know what happened recently that I’ve taken a giant step backwards.  Everything on the left side is swollen and sore from the neck up.  A week ago I could at least down rice in broth after my barf session.  For the past six days, not even rice in broth can I handle.  Everything hurts acutely. Apart from the pain, it’s just too swollen. Again, this is not a complaint session, only for the record.

My diet for the past week has been one homemade protein shake in the morning and a broth in the evening.  Maybe a bottle of gatorade in between.  Swallowing hurts that much.  But just getting past the hurt, it seems like the action of swallowing sends a severe pain shooting through the left hear and left side of the head and that pain hangs around for around for a while.

I’ve been trying to find out from Dr. Rad what the dosage of radiation was that I had during brachytherapy.  After several emails to him, he just won’t tell me.  He says he doesn’t want to speculate on email why I’m having so much discomfort.  I said doc, please, the question I’m asking is not speculative at all.  It’s a black and white question about dosage.  Anyway, we’ll talk about it when I get back he says.  My next appointment with him is next week on the 28th.

Still, as I’m trying to make sense of this logically, I’m putting three things together.  I think the drive to understand why I’m out of normal recovery bounds is reasonable.  Anyway, I hear that with external beam radiation, patients can see effects come back to them six months after — kind of like a rebound effect.  Whether that’s true or not, the next two points perhaps are more concrete.

I keep going back to the hot liquids comparison.  If I’m supersensitive to hot liquids, more than most people, wouldn’t it stand to reason that I could be supersensitive to radiation in the same place?  It seems pretty dopy simple to me.  Combine that with the dosage of radiation during brachytherapy.  Patients normally get between three and six catheters around the base of tongue.  Each catheter holds seeds of radiation.  Most get on the lower count, either three or four.  The “fellow” prior to the surgery told me I’d probably get three or four.  When I work up the next morning, I found out I had seven.  After asking why seven the answer was that the base of the tumor I had was quite large so they wanted to cover the entire area (and they could only see that when they were in the operating room).

So if I had seven catheters as opposed to three or four, doesn’t it stand to reason that I probably had double the dosage?  Or there about?

Therefore, if I’m not out in left field, if I’m supersensitive to radiation in the mouth, if I’ve had a higher than normal dosage during brachytherapy, and perhaps this combined with delayed reaction to external beam, might that be the reason that I’m going through this “outside of normal” healing process? Kind of like a perfect pain storm.  I’m not sure that the doctors like patients figuring it out.  But I’ll dig into it more next Thursday because it’s damn frustrating to be hurting like this when most patients are further down the road to recovery.

In the meantime, besides everything being super sore, it’s a real pain talking.  Especially too much.  And it’s a challenge, because it’s nice to talk, especially to strangers.  Example: getting into a taxi (alone).  Sometimes the cab driver doesn’t talk and other times they can be quite chatty and like to converse.  During this trip, I’ve got to take a taxi to the factory where I’m working and it seems like more times than not, the drivers want to chat it up.  Normally, I like this imbibing in local banter.  Lately though, I’ve had to give one word answers and hope they take the hint.

But what I want to say is ‘read my mind’, or better, ‘think with me’.  But I’m guessing that ‘think with me’ needs to be out of blatant necessity.  I remember when I was in my early twenties, I had to pick up nine high ranking officials from the Taiwanese military at the Philadelphia airport.  It was their first time in the U.S. and none of them spoke a word of english.  They knew I didn’t speak their language, so it was definitely a ‘think with me’ day.  I took them through Philly and we did some sightseeing, and then to Philly’s version of chinatown for lunch.  It was amazing how the ‘think with me’ worked.  We collectively had a good day and they were enthralled at everything they saw.  They had a lot to say among themselves, but between us, there was not much speaking.  No read my lips.  And it worked.

I really wish this nightmare of pain and discomfort would disappear soon.  But in the meantime, I’m trying to refine the ‘think with me’ transmission.  If I’m not doing so well at meditating the pain away, maybe think with me is will help as a baby step in that direction.  But then again, ‘read my mind’ sounds better.  On the other hand, whether it’s ‘think with me’ or ‘read my mind’ maybe it’s better not going there.  Who’d want to do that anyway.  The tongue and voice are beautiful things and I’d like to see them working well.  I’d better focus on that. Tongue and talk, that’s what it’s about.  So, read my,….blog?

3 thoughts on “read my what?

  1. Mother

    Hold on kiddo. There is nothing wrong with your sensitivities nor your brain. You just need someone to fight for you.

  2. JA

    finding out dosage = maybe validates pain/swelling post 2 mos. out
    finding out dosage does nada for healing today, tomorrow and onward. maybe just setting a different set of expectations than previously.
    gently nudging to focus foward.
    curious about your being a tour guide to military folks in your twenties…interested to hear more (maybe in separate communication).
    LOVE YOU and may that chin be propped up if needed. You are an inspiration in many ways.

  3. rel43

    Not to be facetious, but maybe it’s time to start acting like a deaf mute.
    And double radiation—WTF!!!


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