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Update January 17, 2003
Jeff is still at Stanford Hospital. He appreciates visitors, but
has suggested that potential visitors have a few expectations:
- you might not be able to see Jeff
- Jeff might be sleeping
- it might need to be a quick visit
Update January 12, 2003
Jeff was admitted to Stanford
Hospital on January 5 for severe dehydration related to his condition.
After a week, the situation has improved slightly but is still
being worked on. During the course of this, it was additionally
found that he has a large blood clot in his left jugular vein.
Both of these conditions are likely to keep him in the hospital
for several more days. He regrets not being able to answer your
phone calls and emails but wanted to keep you apprised of the
situation.
Update December 6, 2002
The biliary stent procedure
went as expected, and I went home on Monday with a drain from
my right side. Connected to the tube is my precious "bag
o' bile", which must be emptied every 3 hours or so. This
stuff is similar to motor oil, and it's amazing how much shows
up. I'm slowly losing my orange color and returning to pink. The
bag is due to be removed on Monday. I'm beginning to feel a little
better now, but is hasn't been such a good week, feeling-wise.
Update December 1, 2002
I hope you all had a wonderful
Thanksgiving-- I did.
I was fortunate to have
a fairly long period of feeling pretty well before and after
the party. The last two doses of Gemcitabine were increased
doses, hoping to improve its effect on the cancer. However,
in the last two weeks I've been feeling tired and sleepy again.
Last week it was determined that I have jaundice, due to constriction
of the bile duct by the tumor in my pancreas. On Tuesday I
will have a scan to determine where the obstructon lies, and
then a stent will be inserted to drain the duct. I hope I
will feel better once the backup of bile clears. This should
be a same-day procedure if all goes well.
After I recover we will resume
chemotherapy ASAP, however it is not clear at this point which
drug(s) are my best option at this point.
Update November 7, 2002
A year ago it was questionable whether
I would see my 50th birthday. This week it became a reality, and
I am thrilled. I also feel very lucky to be able to feel good
enough to fully enjoy the occasion. Many thanks to all those who
joined me in celebrating and making it perfect. You can re-live
the experience by visiting the photo gallery, where you will find
hundreds of pictures and video clips of the event. It also marked
the launch of the JJS Lung Cancer Foundation, raising over $25K
to support research in lung cancer (see Cancer Foundation link
above).
I was waiting for the results from my recent
CT scan for this update, and I was anticipating good news based
upon how good I feel and the remarkable shrinkage of the nodule
on my chest. Unfortunately the results were very disappointing.
The scan shows my kidney and pancreas tumors have continuted to
increase in size since the last scan. Even worse, I now have several
new lesions in my liver. After consulting with my doctors, we
plan to continue with Gemcitabine treatments for a while under
the theory that it may be helping me to some degree, and taking
to account that other treatment alternatives at this point are
very risky at best.
I am deeply saddened by the untimely loss
of two fellow cancer patients and dear friends, Robert and Joel,
in the past weeks. My heart goes out to their close friends and
families.
Update Sept 30, 2002
At last the long-awaited "Hats"
section has arrived!!! Just go to the "Photo gallery"
and click on one of the new "Contributed Hats" pictures.
If you are using an old version of Netscape you may have some
problems with spacing of the pictures- time to upgrade or switch
to Internet Explorer. Thanks again for all your contributions,
and if you see ??? under your contribution, please remind me which
one you sent.
Last week's MRI showed the brain tumor we treated with the CyberKnife
had shrunk significantly, which is a very good sign. It's still
there, but I don't feel it any more. Even more important, no new
problems showed up (I had been a bit worried).
Gemcitabine doses 3 and 4 went fairly well, thanks to the tireless
care of Carol, Stephen, and Jeannie. Next week I will switch treatment
from Stanford Hospital to the Hope Clinic in San Mateo. Here they
promise a more humane (and rapid) treatment style, along with
a more "folksy" environment assisted by their advertized
canine greeter, "Millie". I will have to find a way
to live without the controversial Stanford "clown",
who had a rather annoying proclivity toward showing up at precisely
the wrong moment. An irritated "Get the Hell out of here
right now" coming from the next room usually preceed his
appearance at my armchair. It will be several more weeks before
we can assess the effect of these treatments on my tumors.Thinking
positive.
Update Sept 5, 2002
Sorry for the late update- I have been having some difficulties
with file transfers.
The CyberKnife procedure on Aug 13 went exactly as planned and
was not a big deal at all. I went back to work that afternoon
and had no trouble remembering where my car keys were. I enjoyed
being able to say, "If what I said didn't make any sense,
it's probably the BRAIN SURGERY talking".
I began Gemcitabine treatments on Aug 21, and a second on the
28th. Many thanks to my brother Scott and my friend Marian for
taking excellent care of me for these first two doses. I have
this week off, then start again next week. So far, the side effects
are not too bad; I just hope it is working on the cancer. We won't
know for several more weeks, however the new tumor on my tummy
doesn't seem to be getting any smaller. I do have a fair amount
of pain in my hips most of the time, and have had to stay on vicodin
constantly. :-(
I was able to participate in our group raft trip on the American
River, after a 1 year delay, and really had a blast. I even swam
one of the rapids. This year set a new record for water bucket
fights. It was great to be outdoors again, and I enjoyed spending
time with such a great group of kids and parent/friends.
Update August 10, 2002:
I had just written the Aug 6 update (see past updates) when I
received more bad news. Last weekend's MRI of my brain found an
8 mm metastatic tumor in the left frontal lobe of my brain. This
is the scenario I had feared from the beginning, and it completely
blows my treatment plans, again. I'm told this has been caught
very early, that it has occurred in a relatively safe region of
my brain, and that treatment has an excellent chance of success.
Therefore, next Mon I will undergo treatment with the new CyberKnife
at Stanford. It uses fractional radiation beams that precisely
irradiate just the desired regions, with mm accuracy. I won't
feel it at all- I hust have to endure being strapped to a table
unable to move for an hour. I will then resume chemotherapy the
following week with a different agent, Gemcitibine.
This is another setback, but my spirits are good and I'm feeling
pretty well, except for pain in my hips in the evenings. In fact,
I'm looking forward to going rafting next weekend.
Thanks for all your support.
Update August 6, 2002:
This Wednesday I will begin a new trial for Epothilone B. This
is a new taxane analog designed for tumors which have shown resistance
to taxol (like mine, unfortunately). It is a Phase I trial, so
it is early in development, and I will be admitted to Stanford
Hospital to receive the drug. It's a bit of a long shot, but I
would very much like to have some of the other kind of luck this
time around.
I am able to function pretty well during the day, however at
night my hips get quite sore and I have to take pain medicine
to get through the evening. I know I have at least one new tumor,
right on my chest. It doesn't hurt much yet but it's a useful
monitor for what the rest of the tumors are doing.
We're pleased to have a new addition to the household-- Twiggy;
a 7-year old cat we have adopted. Thanks to Amy and Roman, who
will surely miss her. You can see her posing on the photo gallery
page.
Update July 19, 2002:
Now that I've had some time to absorb the last bad news (see
previous update), I'm feeling a little better. The tumor in my
left leg has progressed to the point where I can feel it on the
surface and it hurts more. Nevertheless I'm getting around very
well and am busier than ever. I'm currently in a 4-week "blowout"
period before I can start another trial. There are several to
choose from and the choice is far from obvious. Whatever the decision,
I'll probably start again in early August. In the meantime, I'm
having loads of fun with friends, wearing goofy hats, and entertaining
visitors. I've also been experimenting with acupuncture (not self-inflicted),
Chinese herbs, and alternative diets. I'll let you know how that
turns out.
Update July 4, 2002:
This is a hard update to write... I returned from a wonderful weekend
retreat to Carlsbad Caverns with dear friends Carol, Dale, and Jeremy,
to learn that my chemotherapy has completely failed, and the tumors
have continued to grow aggressively. Yesterday we stopped the treatment,
and I'm back to square one. There are other drugs to try, and I
will, but it will require 4 weeks to clear my system and enroll
in another trial. Hoping for much better luck next time. I'm feeling
pretty good generally and am in no immediate danger, however I confess
I'm pretty disappointed and scared. This wasn't easy, and it was
my best option. And now I really AM hairless.
I have received quite a few hats, they are cheering me up greatly,
and I'm enjoying wearing them at most inappropriate times. So
thanks for all your donations. I may be a little slower than planned
getting the pictures posted so please excuse me.
Update June 21, 2002:
Tonight I became a skinhead (well, almost), with a little help from
neighbor Karen. It was a little scary but empowering. Resumed my
"normal" activities today, as a survivor of chemo round
2. It seemed a little rougher on me than round 1, but was made fun
by the excellent and limitless care of "Friend for Life"
Carol. Both Eric and I enjoyed her visit very much. Carol also initiated
a new member of the "team", home care practitioner Patricia.
On Sunday, Patricia prepared us a dinner from her native Peru, which
we all enjoyed. She will be returning for round 3, on July 3.
Now that I'm fully "exposed", here's a chance to have
some fun with this. Many have mused, "Is there anything Jeff
won't do?" I have indeed asked myself that same question
on occasion. So now we will find out the answer. Here's how it
works: If you wish to participate, you send me a hat, of your
choice. Be as creative as you like, within the limits of decorum.
I will commit to wear the hat at work, at least half the day,
and will record the event with a picture on this site, credited
to you if you like. My only requirements are that it fit me (7
3/8) and that it not be too painful (my head is getting pretty
sore just now so think soft). If you need a shipping address,
send an email through my picture above. Count is already up to
3. Maybe I should start pleading for mercy now...
Update June 13, 2002:
I received chemo #2 today. It went much easier, but I'm feeling
a little green and crampy already. Also I get hiccups whenever
I eat. This is a bit annoying, but I can stand it. My "rash"
is improving, thanks to some topical antibiotic I was given. It's
still more than I want to deal with long term, but is a vast improvement
over last week. The doctor is a bit worried about the long term
effects of the neuropathy, of which I'm getting an unusually early
effect. In fact I wasn't supposed to have that yet, and it doesn't
ever go completely away, apparently. In other developments, my
hair is beginning to part company from me, 2-3 hairs at a time
so far, but I suspect it will pick up momentum sometime soon.
I have Karin's friend Carol here for a week, and also a nurse
for 4 days. I am getting a great deal of help on request from
my thoughtful neighbors and friends too. Thanks to all.
Update June 2, 2002:
Feeling much better this weekend and I enjoyed the ability to
do a few neglected household chores. Guess I'm getting used to
tingling fingers and toes. The skin rash is bad though, and getting
worse each day. I'm a bit worried about where the rash ends up...
I'm already tired of it. Also have some painful sores in my mouth.
Getting plenty of excercise, to get ready for the next cycle which
begins in 9 days!
Thanks of all the prayers... I feel them!
Update May 30 2002:
I can now say from experience that chemotherapy is no fun at
all. The treatment itself was just long and boring, and nothing
hit till Friday, 2 days later. But when it did, WOW. The pain
was intense, and while I've never actually been hit by a bus,
I can imagine it being a similar sensation. My friend Mark took
well beyond excellent care of me and nursed me back to some sense
of "normality" by Monday. I still have neuropathy in
my feet and fingers, which makes typing less fun overall. The
big news is that I have broken out with "the rash" [which
means I'm not getting the placebo treatment]. I will have to learn
how to deal with it, because the plan is to receive the drug from
now on.
I went back to Stanford yesterday to relieve my intense craving
for i.v. lines and hospital food, and to receive my monthly Zometa
infusion while there.
Thanks--I'm appreciating all the email!
Update May 24 2002:
On Wednesday I received my first dose of chemotherapy. It included
first the Tarceva, then Paclitaxel for 4 hours, then Carboplatin
for the last hour. My friend Eric S. was kind enough to escort
me through the whole 9.5 hour ordeal. It was not painful, but
overall I'd rather be in Philadelphia. Since then I've been under
the excellent care of friend Mark S, who treats me like a king.
I've had some bouts with hiccups, stomach cramps, unusually sensitive
skin, and today some dizziness and fatigue. Not really all that
bad, so far, but there is more yet before me. Now it's time for
those little cancer bastards to DIE! Thank you all for all the
good will and email- I feel it all coming in
Update May 15, 2002:
Last week's PET scan confirmed the presence of moderate size metastatic
sites in my kidneys, pancreas, and discovered several other additional
new sites. In addition, my hip site is growing again. The latter
is particularly upsetting. Yesterday I joined an experimental
chemotherapy trial with the new drug OSI-774, and will start next
week. This is a new "biological" drug developed for cancers like
the one attacking me. As it is a randomized trial, I will receive
standard chemotherapy and may or may not receive the new drug
also (I won't know). If successful, it will span the next 18 weeks.
Prepare for my new fashionably "bald" look
Update May 7, 2002:
On May 1 my recent CT scan detected 4 new abdominal tumors: 2
in my left kidney, one in my right kidney and pancreas. Obviously,
this is a major setback. I will need to undergo some additional
tests to verify their origin, and then begin chemotherapy shortly.
I expect it to last several weeks, and will likely put me out
of commission well into June. I just hope it works. Other than
that bad news, I have been feeling great lately. My hip and chest
sites have been improving slowly but steadily, and I even was
able to play a little tennis last weekend with Eric and do some
work in the yard.
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