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A Visit to the Radiation Oncologist, September 2015

Hi, Dave -
I'm down at MD Anderson - again - and I am still in remission. My CT
scan was early this morning and got results just an hour ago. It's nearly six
months now that I've been in remission . . . so unlike last year, I suppose this
time it will stick.

I am here for 10 days, so I drove1 and I brought my bike. It's still in the
car. But my intentions were/are good. I'm here for swallowing and speech
therapy . . . nine days, plus a weekend and a 10 hour drive down and back. a
real grind. I've had some sort of bout with SERIOUS back pain - sciatica -
brutal - so that parts of the day I could hardly walk. Finally it hit me that my
anguish and decrepitude were completely obvious since I arrived which I have
to associate with some combination of a long car ride and posture problems
from the neck radiation. MD Anderson employees continually stop me in the
halls and ask if I am okay and offer to carry my (very heavy) brief case or even
my coffee.

I'm sorry that my pain and my voice and swallowing are still changing.
Voice is apparently changing - not due to radiation as I thought - but due to the
fact that neck surgery took a couple of important nerves out of the side of my
neck (10th 11th cranial nerves . . .
vagus nerve*?).

After nearly two years, I still cannot figure out what happened to me exactly, nor
what WILL happen to me. (I asked so many questions of my radiation
oncologist today that he literally said that I needed to get a book on introductory
radiation oncology. If he weren't so smart, I'd have smacked him.) This stuff is
an absolute riddle, so I am just going along for the ride, I guess. Fortunately,
these chaps at MDACC know what they are doing.

But I am vertical and relatively robust, so I am very fortunate.


1 Drove through Texarkana, Arkansas and Texas. These folks are annoying when it comes to naming towns.
* I learned later that the surgeon either doesn't or didn't touch the vagus nerve.
If he had cut it or removed it, I'd be having chest and gastrointestinal issues.
But the nerve is necessarily in the field of radiation, so it is fully cooked - burnt
and scarred - at this point.

Thanks for the note. in fact, I went online months ago and bought two used
"introduction to medical radiation" books. I did not understand a word. Too
much physics, too abstract, too dense for my little cranium. I need the "Jane
Meets Spot" version. Something that starts with "This is an atom . . . see the
atom . . . it is a pretty atom . . . see the ion . . . it is a pretty ion . . . see the ion
play . . . see Dick and Jane radiate themselves."

Yesterday I had a intern or resident (MIT undergrad and tufts med school . . .
Asian, what else? . . . oops that was sooo racial / ethnic!) doing my endoscopy
while the rad doc just purely observed and offered some mild hints now and
then. She looked about 12, something we know now she will appreciate in 20 or
30 years. She could not use the tool, could not figure out how to turn it and
manage it, she could not get the little light on, could not get it into and down my
nose. Some patients might have freaked out, but I just sat there - no suffering
because I was mostly anesthetized - at least locally. She could not get the tube
down my nose, and kept working with it so that at one point the rad doc said,
"Just shove it in!" Fun and games in the radiation clinic at
the world's best head/neck cancer center!

They actually changed out the tool and the rad doc called the nurse in and told
her "send this one back to the manufacturer. I think we've had problems with
this one before."

Finally they changed tools, gave me more numbing down my nose and
eventually finished. Much mucositis and apparently swelling
and fibrosis and she struggled more. She finally got it and they did a thorough
exam and said everything looked very good.

Signs of my advancing age! Twenty years ago - before I transformed from

Type A and impatient . . . lol lol - I'd have grabbed the f' ing device from her
and shoved it down my own nose, handed it back and said, "HERE!". I was
docile and compliant and terribly proud of myself.
There was a Danish female physician observing - at MDACC for a month of
training and observation - and she said not a single word the entire session. I
don't know if she was just a very wise doc or was slightly shocked.

Really, I asked the rad doc to tell me what "fractionated" meant and he said I
should read the article he wrote about it. I have heard from a couple of
sources that he is a fabulous mentor to young docs and a brilliant physicist /
dosimetrist, and brilliant CT reader, and the nurses seem to love him . . .
Hopkins does not turn out a lot of dumb incompetents . . . but his clinical
skills don't win him any fans.

all my love . . . Michael t.