8-31-2009
Deb just had her semi-annual check-up with her oncologist Dr. Lange,
with CT-scan and everything, and it all looks fine. That puts us 6 1/2
years out from the GIST cancer and 13 years out from the breast cancer
with no evidence of recurrence.
Since my last update, we ran across one of the unexpected side-effects
of cancer and cancer treatment: Deb has to be very careful about
showing up in strange emergency rooms.
While we were at a conference in Salt Lake City in June, she developed
conjunctivitis (an eye infection) together with a cough and fever that
were the tail-end of a cold. Conjunctivitis is one of those
easily-treated things that nonetheless you don't mess around with.
(It's your eye, after all.) So we went to the emergency room.
We had a hard time getting back out.
I don't blame the staff. They did their jobs well and we developed a
good rapport with the doctor handling Deb's case. But look at it from
their point of view: Deb's body has asterisks all over it. Even on a
good day, enough things test suspiciously that you'd have to think
twice about signing a piece of paper that said it was safe for her to
go home. Now add in a few actual symptoms, like the eye and the mild
fever and the cough.
What gave the Utah doctors the most heartburn was a residual effect of
her lung collapsing during the GIST surgery in 2003. The lung only
partially re-inflated, and the extra space has filled up with some
fibrous gunk that isn't worth the major chest surgery it would take to
get it out. We know about it and our doctors know about it, and other
than making it harder for Deb to hike uphill it hasn't caused any
trouble. But it sounds bad to a stethoscope looks like hell on an x-ray.
By this point, of course, any doctor we might have called back east was
off duty and probably in bed. Deb is able to access some of her patient
records online, so she produced the report (but not the image) from her
most recent CT scan. (That was hilarious, by the way, and made me
realize just how bad the medical records situation is: They didn't have
an internet-enabled computer in the emergency room, so Deb -- in her
patient robe -- had to toddle off to somebody's office to go print out
her medical records for them.)
Even so, without the actual CT image, they couldn't say for sure
whether the shape of the lung had changed recently or guarantee that
some infection wasn't hiding in there somewhere. They wanted to do
their own scan, maybe grab a biopsy of the gunk, and keep her overnight
for observation.
We knew where this would lead, because Deb's body is fractally suspect.
Any test you do to zero in on one mystery is bound to reveal several
new mysteries. We believed she was basically OK, but we couldn't
imagine any test that would clearly say, "Let her go."
Turning down the tests and getting out of the emergency room within the
system -- not signing out "against medical advice" which risks all
kinds of things in your insurance coverage -- required our full
doctor-influencing powers, which by now are formidable. (Our technical
educations, calmness under pressure, knowledge of Deb's specific
situation, general familiarity with the medical system, and
semi-mystical knack for guessing what doctors are thinking -- it all
combines to cast a spell that causes most doctors to talk to us like
equals. If I could teach it, I would.)
So, we got out of there, the eye drops killed the conjunctivitis, and
the cough and fever went away according to the usual chest-cold
schedule. And we probably saved our insurance company maybe $10,000 --
or much more if unnecessary testing and treatment caused a new problem,
as sometimes happens.
We discussed this episode with Dr. Lange Monday, but he didn't have any
useful advice beyond doing what we did. (There seems to be no practical
way for us to travel with a copy of Deb's latest CT image.) He did
point out the more general lesson: When Obama claims that improving the
medical-records system would save money, this is what he's talking
about.
(I got a complaint once about the little political asides in these
updates. But I'm just reporting. Put us in a room with a doctor as
liberal as Lange, add in the rapport-building thing we do, and that's
where the conversation goes.)
Just so you don't think we spend all our time talking to doctors (or make too much of my remark about uphill hiking) here's a picture from the Iceland trip we took in July. It shows Deb at the top of a hill overlooking the Thorsmork valley. Yes, those are glaciers in the background.
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