Re: It's all about ME!

On Sat, 24 Jan 2009 09:47:15 -0800, Nels Satterlund
<NelsS@xxxxxxxxxxxxxx> wrote:

A twofer

January 20th, 2009
08:10 pm - Crash but no burn

Today was the first day without taking steroids in about a month, and I
ran out of steam late in the afternoon. Felt strange to be tired, but I
went home about a half hour early and I was able to take a short nap and
I'm looking forward to sleeping all night like a normal person. In
contrast to yesterday, where I was on top of the world all day, today
was a little off. Started out by me forgetting I had a 7 am meeting,
which I ended up attending from home. That meant I had to park in the
far lot at work, not a big deal but not my usual spot. I was nice to be
back in plant and get some face time with my team instead of working
from home. The rest of the day was just a normal day at work. Glad I
left a little early as one of the traffic lights was out on the route
home, I expect it was a real mess by normal commute time. I managed to
give my self a panic attack, looking for something that was right in my
wallet, I just hadn?t recognized it. I think it may be part of the
didn?t take any steroids crash. A bit of a ramble but that?s today?s
update.

If you are anything like me, get set for a lot of fatigue.

For example, yesterday I went to bed at a civilized hour (10:30 PM),
woke at 5:30 AM, went to use the bathroom and then back to bed for what
I thought would be two or three hours. I woke up at 11:00 AM having
essentially slept for 12 hours. I feel good *now*.

I am less active than you seem to be but I find that the day after or
the next day after a significant effort (Thursday's double doctor
appointments, for example) I need either the big nap (3 to 6 hours) or
the long sleep that I got last night.

Thursday went pretty much as expected. I cleared all the hurdles and am
back on the study at the initial dosage. They were unable to do a
carboxyhemoglobin test on me, so the window to be sure if I was being CO
poisoned is probably past. I was impressed by the Interventional
Radiologists who talked to me about the chemoembolization. They
stressed that, although the procedure was approved for cases like mine,
it *was* still experimental (although, obviously not as experimental as
the study drug) - the technique itself only being ten years old and my
form of tumor being extremely rare. However, they felt good about their
ability to have a good outcome with someone who still has very good
liver function as they pointed out, using blood test results, that I do
have. They were upbeat and understanding of my decision to go back to
the higher dose - as that had worked before. I think they understand
that they will eventually get to work on me when the drug proves to have
lost effectiveness - either in the short term or the hoped for longer
term (they all seem to quit working at some point).

January 24th, 2009
09:37 am - Don't follow my predictions

Well I?m not much of a prophet, I didn?t sleep well and Wednesday
sucked. I woke about the usual time, which was good, as I had forgotten
to set the alarm. As I stumbled in to take my shower I checked in the
mirror, nope no axe embedded in my forehead, it just felt that way. I
had hoped that the shower combination of steam and heat would clear my
head, but no luck. I slowly got dressed and then coming to my senses
got undressed and went back to bed with my sinus migraine. I don?t know
if it has anything to do with all the stuff I?d been taking (I think I
may be using this phrase often for the near future) or just the change
in the weather to rainy, triggered it I finally managed to get up
about 12:30 but was mostly useless the rest of the day, I did make it to
one meeting I wanted to attend. It is nice I can easily do that from
home. We again missed the Tango class, it does seem that fate is
against that class.. Thursday was a normal day, went to work and had a
good D&D game. Friday, other than sleeping all night then moving really
slow in the morning was much the same and we went over Argentine Tango
in our private dance lesson. Only current issue is that I?m having some
left hip pain (well I did sleep exclusively on that side for about 6
days as the port placement site healed), some lower back stiffness and
my left ankle is swelling so I?m keeping my leg elevated as much as I
can. My new chair showed up and while not as fancy as my old one, it is
much more comfortable.

Nels
So exciting ...

Do you have much pain from the port? I didn't at first, but your
mention makes me wonder if my right shoulder issues are possibly from
having the port.
--
"The Dodger right-hander is set and here's his pitch to Jack Clark.
Swing and a long one into left field! Adios, goodbye and maybe that's
a winner! A three-run homer for Clark, and the Cardinals lead by the
score of 7 to 5 and they may go to the World Series on that one, folks!"
- John Francis Buck
.

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