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Roller Coaster - Cancer
seems to enjoy subjecting its victims to ups and downs. At times
the news is hopeful, optimistic, promising...... At other times it is
more full of despair and doom.
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the Comet from Forest Park Highlands Amusement Park - St. Louis
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Up on the roller coaster -A
good report..August, 2010. The doctor does full body CTscans
every 2
months. I am on maintenance chemo (lighter dose, less frequency)
. He is checking for signs of new cancer activity. The best
news one can get is no new cancer activity. The scan suggests the
maintenance chemo is doing its job ......for now. A brain MRI
suggests the Gamma Knife stopped the 5 small brain tumors discussed in
previous update.
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Upbeat - I was walking on Bernal
Hill just about every day (Bernal Hill is beautiful hill we live on in
middle of the city with 360' views.)
Teaching - starting this
last fall I have returned to teaching. I teach 2 courses each
semester. I really do enjoy it. Students are marvelous in
what they come up with. One course is the Art 511 Art and
Emerging Research. Students identify areas of scientific or
technological research that interests them. Then they do research
to understand how far researchers have gotten and what challenges
remain. Then they mock up an art event that incorporates that
information and present it on the web. For example for the first
project this semester -enhancing people's synesthesia, an artificial
intelligent sex doll, plastic model of a dream derived from its readings, a
tsunami generating machine, a room with levitating magnetic balls via
superconducting magnets, law enforcement's use of fmri to find people
with criminal tendencies, and a dome for an algae powered amusement
park. Here is the link to that course: Art 511 Art and Emerging Tech
A hopeful time. For a while Cancer seems to be giving me a break....
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Cancer never sleeps.
Cancer spends a lot of time deciding what system it should attack next.
Even though a scan is clear, that doesn't mean that cancer has gone
away. The cancer cells are debating what system would be most fun
to mess with. Depending on your aesthetic you could think of it as Whack-a- Mole or the biblical story Job.
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Roller
coaster down. Funny
symptoms begin to appear. I need to urinate all the time.
The primary doc suggests the endocrinologist do a workup. She
orders hormone blood tests. Vassopressin which controls urination
is low, but so is thyroid, testosterone, and some others. The
pituitary gland is the master gland controlling these hormones.
She orders a pituitary MRI.
(The pituitary is so small - size of a pea -its details don't show up
on a regular
MRI). The pituitary MRI shows strange cells. UCSF's tumor
board of experts decides it is cancer of the pituitary. It is
unusual for lung cancer to metastasize to the pituitary but I am famous
for wanting to do things that are not standard.
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The
pea sized pituitary is a
powerful gland. (You learn a lot of anatomy in this process.) Troubling
symptoms - low energy, lots of
small pains, low levels of thyroid and testosterone even after
starting supplements. The endocrinologist has started
hormone supplements but the effect has not been what is expected ...
yet. Actually I feel worse than I
felt during
earlier stages of the cancer -- This is proably the worst shape I've been in. Metabolism is low, losing body
weight, chills when everyone else is hot, loss of bone mass, muscle
mass, mood, fatigue, body strength, hopefullness. You can see from my tricorder
readings
that there is strong negative effect on my general well being.My
teaching suffers a bit - I am not my usual sparkly self.
** Hint from Steve - protect your pituitary.
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Roller
coaster uncertain direction:
The doctor believes a process called fractionated external beam
radiotherapy can help. The pituitary is very small and
vulnerable. The optic chiasm which is crucial to seeing passes
right by the pituitary. Any cancer expansion can damage the
pituitary and all its harmones and can damage vision via the optic
chiasm. Any misdirected radiation beam has the same risks. The
most accurate radiation treatments like the gamma knife use beams that
are too powerful. Instead a process of fractionation is used
where the total dose is divided into 30 parts. It is believed
that low power beams do not damage normal tissue but do affect the
cancer. The treatment is given every day (except for weekends) for six weeks. A plastic
mask is created to help aim the beams.
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My
last PET scan in October, 2010 again did not show any new cancer
activity but the CEA tumor blood test took a big jump. Something
is
going on but it is not quite clear what. Also,
the hormone replacements are difficult to get to the right
levels. They keep trying different doses. There are some
signs that they are beginning to work but I still don't feel like those
days when I walked on the Hill. So the direction of the roller
coaster is for now a mystery.....
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