This item is Sindi Keesan's continuing journal.  The first section
is in the previous Agora conference, agora46, item 167.  ( item:agora46,167
)

480 responses total.

Looks like SOMEONE forgot to switch logins.  Oh well.  At least now we know
who Sindi REALLY is.  (It's not like someone like that could be read, you
know.).

Summary of events - I was diagnosed in August with 'large B-cell lymphoma'
- stage IV intermediate grade after several months of weight loss and other
symptoms, which was first caught by a couple of blood tests (complete blood
count - abnormally high white blood cell count, and complete metabolic panel
- high alkaline phosphatase value) done routinely.  I was eventually down to
93 pounds, very tired, shallow breathing, while the testing was going on one
test per week (CAT scan, biopsy of the spleen which detected two masses =
tumors composed of lymphocytes which are part of the immune system).  I also
had some enlarged lymph nodes in the abdomen and a lot of fluid produced by
the cancerous lymphocytes accumulated in the space around my lungs (which
makes it stage IV - just spleen tumor would be stage III).  

I called a doctor friend after the spleen biopsy got infected and he
personally drove me to the hospital the next day, where I spent ten days
fixing the problems caused by the tumor (fluid drainage, transfusion since
I was not making enough hemoglobin) and had my first chemotherapy.  I had a
nice private room because all the rooms for hematology/oncology are private
due to people's reduced immunity. No flowers allowed on that floor.  They
eventually decided I was stabilized and let me go home where I could sleep
without being interrupted for blood pressure readings, and eat real food.
Hospital food is all low-fat high-sugar 'heart smart'.  Jim Deigert (jdeigert)
spent most of his waking hours holding my hand during minor surgeries and
making sure that I ate something and he is now still feeding me while I
recover from the exhaustion due to the lymphoma and the therapy, and gain back
enough weight that I can build back the lost muscle.

I had a second chemotherapy last week Monday.  The first one consisted of
three drugs which prevent cells from dividing and therefore wiped out my white
and red blood cells.  On the 10th day I had very little immunity left and was
bleeding easily when I blew my nose.  My count of neutrophils (the cells that
attack infections) had dropped from a high of 35 to a low of 0.1.  The high
value was due to fighting off the cancer and the low value to the drugs.
The normal value is 1.4-7.5

Three weeks after the first chemotherapy 'absolute neutrophils' (k/mm3) had
gone back up to 8.3 (slightly above normal - I was catching a cold).  I fought
off the cold okay.  On the sixth day after treatment I developed a thrush
infection of the mouth (fungus) which I had had for a large part of the first
cycle but it stopped bothering me after 3 days (which I thought was due to
taking the proper antifungal drug for it).

Today (10th day of the second cycle) they had me come in for another blood
draw (they took one vial of blood).  I was expecting 0.1 neutrophils again,
and low platelet count (platelets work to clot the blood) and other low values
showing that my bone marrow was still not back to producing blood cells.

The nurse came out and told me to take off my mask.  All of my values are
normal.  Neutrophils 5.4.  I can have visitors for the next ten days and
probably for the past few days it would have been okay.  I have no idea why
my values are normal this month and were so low last time but I am not
complaining.

Today we also pushed my walking ability to the limit.  I had been bedridden
for a couple of weeks before hospitalization due to extreme fatigue and then
ten days in the hospital was tied to near the bed by an IV drip (for
rehydration, antibiotics, etc.) and a tube delivering oxygen to near my nose,
so my muscles continued to disappear.  I have been walking around the house
since then, and after the first few days of having trouble even sitting up
in bed Jim dragged me outside to walk to the near corner, then the far corner,
then both, then yesterday we walked around the library and bank and also all
the way around the block, which I thought was the limit.

Today we walked from one hospital building to the other and then the cafeteria
(where we had something unbelievably salty for lunch - JIm ate half of my
'chimichanga' and his own pizza) and then back to the original building and
then the car.  I was really wobbly by the end, and I had to stop once in a
while and sit, but this was about 10 blocks I think.  Next time we will go
farther around the neighborhood but there are no nice comfy padded benches
to rest on, in fact I cannot even sit on the park benches unless we take along
cushions because I have no built-in cushioning.

My pulse when I entered the hospital was 120 resting.  It is now 100 after
exercise and has been down below 90 resting (but went back up after I spent
a few days in bed after chemotherapy).We had our.

Got interrupted by a beginner trying to send telegrams (it was empty).
We had our first visitor this evening.  Someone we had met this spring on a
plant walk, who had invited three of us to lunch and to pull invasive garlic
mustard from the local city park (which she had helped the city to acquire).
I had promised last spring to introduce her to some friend with a nice flower
garden and then had Jim call to apologize that I had not done so.  She stopped
by with homemade cookies and we chatted about her family's medical experiences
- son had brain surgery at age 4 to remove a tumor, husband has been treated
twice with tuberculin virus to boost his immunity in the bladder to fight off
cancer.  She said the second treatment nearly killed him.  They inject the
virus just into the bladder.  He also has had strokes.  I am lucky.

We plan to walk in her woods again when I am a bit less wobbly on my feet.
First I have to walk the several uphill blocks to Eberwhite woods, prove I
can cross Liberty St. without getting killed (there are now helpful islands
in the middle every so often), and walk around there for a bit.  I think I
will spend the next two days with sore muscles first.

The cancer center pharmacist gave me an 800 number for Bedford Labsk which
makes one of the three chemotherapy drugs used first cycle.  (The second cycle
also included a monoclonal antibody specific to my type of lymphoma - which
is the only one of the drugs without side effects after treatment).  I have
a very rare side effect in that I have nearly lost my voice and keep choking
on liquids and even on my own mucus (I had a cold) due to a swollen throat.
The company will check this out and contact me and/or the doctor in case I
need the dose reduced or the drug discontinued.  I am hoping this is a
temporary effect, like the bone marrow depression, hair loss (I only lost a
little bit for a few days so far), and nerve damage (tingly fingers and shaky
hands - will go away after treatment ends in January, probably).

I don't have the problems some people have - no nausea, no appetite loss
(perhaps they did not lose as much weight as I did first or were fatter to
start with).  No reaction to the antibody at all (fever, chills, drop in blood
pressure).  I don't need surgery (other than the two fluid drainages, bone
marrow and spleen biopsy during hospitalization) or radiation.  The spleen
tumor seems to have disappeared.  They will check with another CAT scan in
a month.  I have four more chemotherapies to go and at least 15 pounds to gain
(6 down - in one month).  I have the easiest type of cancer to treat but it
tends to come back again after 5-10 years and people just repeat treatment.

I am not strong enough to work (self-employed translator) nor have I found
any chair padded enough to sit in for long as my bones all stick out.
I referred someone who found my website and had something (poetry?) in
Albanian that she wanted translated, to a native Albanian with good English.

My platelet count is now 433 - normal being 150-450 (my blood clots well)
and my lymphocyte count is 1.1 (normal being 0.8-5.0).  This means I have low
normal lymphocyte counts.  The lymphocytes found in blood are small or medium,
the large ones being found in lymph node.  It is the large ones that became
abnormal (uncontrolled multiplication) so this count is not related to the
cancer, which is 'large B-cell lymphoma'.  I don't know how the large ones
got to my spleen to form a mass - perhaps they do travel in blood sometimes.

My hemoglobin is 12.7 - normal is 12.0-16.0 - meaning I am making my own
hemoglobin since this is slightly higher than after transfusion (10.8).  In
the hospital it went up on its own to 11.3 at the time of discharge and was
12 three weeks ago.  It was 13.1 just before chemotherapy so this means
hemoglobin production was slightly depressed by the chemotherapy.

There are also various other measures of blood iron - red blood cell count,
hematocrit (the percentage of your blood that is red blood cells, determined
by centrifuging it).  Mine is 38.6 (normal 35.0-48.0).  When my father was
on kidney dialysis at home my mother had to take his hematocrit every
dialysis.  We had our own centrifuge.  She hated the sight of blood.
When I was in high school biology we were also supposed to prick our fingers
and take blood to look at on a slide.  I was not good at this and nearly
fainted trying so the teacher had to take mine.  I recall having a high
hematocrit (about 45?) and also a high lung volume (which I need to get back)
and lots of white blood cells.

Red cell distribution width - high ???


My alkaline phosphatase is 133, normal being 30-130.  In July I had an
abnormally high value, which indicated problems.  Creatinine low normal,
sodium and chloride high normal (before the salty lunch), potassium ditto.

Muscles sore.

awesome sindi, you sound like you're on the upswing!

Yes, at least as far as blood values.  I don't know why some people need to
get injections of Neupogen and I did not - as I said, I feel very lucky
compared to just about everyone else who has been through this.

Today someone in Spain (another translator) wrote me that he also had
'mucositis' which somehow combined with the nausea to make it even harder to
eat.  Lots of thick mucus all the time.  I also have been coughing up mucus
- wonder how that is related to the voice/swallowing problem.  One more thing
to tell the drug company, I guess. No word from them.
Jim called to find out why the mattress pad that they mailed last Thursday
was not here in 2-3 UPS business days.  They had not mailed it yet.

This morning before I fell asleep for 1.5 hours we went for a walk and I made
it up the hill to orchard remains at the local nursing home.  It is mostly
grass now but also about 10 apple trees (a couple of which are pretty good),
two pears and one sour crab apple.  In a week or so we may try drying apples.
The second batch of dried pears is good.  The pears come from full-size trees
maybe 30-40 feet high.  Nowadays orchards are on dwarf trees.  So the pears
we get are those that ripened enough to fall on the grass.  There was a man
there from Pinckney with two 5-gallon buckets collecting fallen apples to put
out for the deer so he could shoot them.  On the way back from the hospital
we also spotted a small patch of apple trees between two streets, two of which
have good apples.  There must have been a lot of orchards in town once.
I recall picking apples from one that used to be on Liberty in the 70s before
it became housing.

I was going to suggest walking in another direction but discovered Jim asleep
in the kitchen and sent him to bed.  I think I am over the cold faster than
he is.

The AIWA finally went back together last night (apart since Saturday).  Now
the CD tray won't even open but since it won't play who cares.  I messed up
the preprogramming for #1 again but set CBC, WKAR (Lansing) and Toledo to 2,
3, and 4.  I cannot imagine someone programming 10+ stations.

Reading Gaskell's Wives and Daughters, where people continue to die young of
some undefined disease, or consumption, and there are also two invalids slowly
dying, and widows remarrying widowers, and children dying in infancy of
scarlet fever.  

I continue to get spam about new ways to lose weight fast.  I was discussing
Prilosec (a drug given with prednisone to protect the stomach lining) with
another cancer patient and discovered that my spam filter was catching the
subject line.  I am filtering on the string 'lose'.

Today I weighed 100 pounds, a milestone.  I never thought I could gain 2
pounds per week even trying.  Sept. 1 I weighed 93 pounds.  In the hospital
my weight fluctuated depending on the ratios of the saline drip and how much
Lasix they were giving me (which took the fluid back out).  It was up to 110
one day that I had edema in my feet.

This afternoon we walked to the far end of Jim's block, then the next long
block, around that, and back.  Just under 1/2 mile if these are 10 blocks to
the mile.  Halfway to Main St.  My legs are still feeling wobbly this evening.

The dried pears came out like candy.  We are discussing how to blacken the
skin of an eggplant for making ajvar while also baking the inside.  You mash
the baked peeled red peppers (that we did a few days ago) with mashed eggplant
and some fried garlic and onions and then maybe fry the result.

The hospital billed us for Jim's non-diagnostic blood tests which I had
carefully had them mark S-preventive so that they would bill them properly
to the insurance company and the PPOM company that the bills go through (and
get discounted through).  First time around they billed this wrong, I had
called and asked them to fix it.  Still not fixed.  The insurance does not
pay for diagnostic tests (unless you go over the deductible) but it does pay
80% of $400 worth of diagnostic tests.  U of M is not going to get paid
anything until they get the billing redone.  In my case I am better off having
this billed as diagnostic since the insurance will pay for it (I am over the
$5000 deductible already by a large amount).  I bet they billed mine as
preventive.  My bill has not arrived yet.  The statements are arriving in
rather random order.

We are invited to the annual solar homes tour two days before my next
chemotherapy and may go (in a car, hardly appropriate).  One of the two
sponsors is a friend who installs solar panels, and there is a drawing for
a solar power system which Jim plans to use for his hot water.  He is sure
he will win.  He once won a roller shutter for a patio door.  (He put it on
a double window as he has no patio door).  And a Cleveland Rocks mug for me.
Leslie Science Center and the Recycle Ann Arbor 'En-House' exhibit are on the
tour along with four houses (one  of which probably belongs to our friend)
with solar water heaters etc.  This is one week from now.  I biked to the one
last year, which included houses all over Ann Arbor, and met the architect
who designed one and was still living in it since the fifties.  His double
glazed windows were still working properly, to his amazement.

Keep on doing good, Sindi =)

Yesterday my landlord called here to tell us inspection is Tuesday and put
9V batteries in the three smoke detectors. (Every inspector had their own idea
on where to put a smoke detector near the kitchen so as to wake someone
sleeping in the bedroom that nobody every sleeps in.)  And make sure the
windows all have locks that work.  And his answering machine was not working,
did we have another he could use...

Jim got to talking with him and his brother is also doing chemotherapy and
had a white blood cell count in the thousands.  (It is supposed to be
somewhere in the thousands - 1-5 k/mm3 means 1000-5000).  Epidemic of cancer?
Is there anyone reading this who does NOT know someone else who had cancer?

Our morning stroll turned into an apple-tasting event.  The orchard at the
end of the street next to the nursing home has about 20 trees left - the rest
has gone to grass.  The pear tree branches try to grown straight up and they
were both already about 40' high, and apples a bit shorter, so we just picked
up windfalls and sampled.  Several tasteless red delicious.  A couple of mushy
and almost as tasteleses McIntosh.  A couple of nice tasting red apples with
soft white fless.  One tree still has most of its large green apples and they
taste like Granny Smith.  We stook home a sampling for drying and oatmeal,
along with the last of the pears.  Our company including two squirrels chasing
each other - I don't know why they bothering eating all of Jim's pears.  Also
two very large crows.  I sat on the grass wishing I were not allergic to
beestings.

The early evening walk is scheduled to be on the half-circle new road with
80s and 90s houses that was built where there used to be a swamp (left for
drainage purposes).  They are all enormous and we call them garage houses as
that is about all you see from the street.  Some day the fashion may switch
back to something cheaper to build and heat.  THe neighborhood is mixed - west
of Jim's house mostly 20s and 30s houses with porches, then 40s Cape Cods and
a few infills of long narrow 50s houses, some flat-roofed 60s duplexes.

Maybe I should be doing aerobic exercises to get my pulse down from 100
resting?  My muscle strength is improving but not the pulse.  

Today I got a bill from the hospital for $138 worth of blood tests for Jim
(routine) that the insurance was supposed to have paid 80% of (up to $400)
that someone apparently did not bill correctly.  Also a second bill from St.
Joe's for a test that was done at U of M - I know because I personally carried
the sample to U of M.  Pap smear.  With the name of the doctor on it again.
Someone at St. Joe's had promised to fix this about a month ago, after the
accounting person at teh doctor's office claimed she had nothing to do with
it.  I think I had better fax her the bill and ask what is going on. $38.
I dare St. Joe's to prove they did anything for the money other than generate
bills.  The doctor usually has tests done at St. Joe's but my insurance
insisted on using U of M.  The first person I called at St. Joe's denied that
St. Joe's had any responsibility and told me to call the doctor, who told me
to call St. Joe's.  

        I'b beginning to wonder if instead of imcopitence, it is out
and out fraud.  My freind in Florida had to clear up bunches of bills
that his dad incured before passing away.  I can see how easy most
people pay to get it past them.

My friend in Budapest, who was a roommate at a Slovene summer school in 1973,
tells me the Slovene for spleen is revnica.  I now have no excuse for not
writing my Slovene friend in Trieste whose sister just went through
chemotherapy for stomach cancer.

Had a nice visit from Ken and Leslie this evening.  They sampled our dried
fruits and discussed music with another visiting friend.  This time I was able
to sit throughout the visit.  Two weeks ago when Ken visited I gradually
dropped onto the pillows.  He brought five more Baroque and Classical CDs to
listen to from Friday evening through Sunday evening instead of jazz, folk,
and rock music (also 4-7 weekdays).  Leslie will try to make a CD of her Don
Giovanni performance if she can find the time.

Today's walk was in a neighborhood of rather boring and similar 60s duplexes
which they tried to vary by alternating brick and plywood trim.  

Bedford Labs sent me to 35K MSWORD documents about the side effects of
Doxorubicin.  (2K more and grex would have refused the emails).  Also they
tried to report my adverse reaction to my doctor and got both my name wrong
(Bea) and her email address.  Nobody can understand me on the phone.
Now I need to decipher the MSWORD. I hope this 486 at Jim's house has Antiword
already on it but I have a few other programs that should also work if I don't
care about correct formatting.

St. Joe's says the $38 bill was because my doctor 'requisitioned a pap smear'.
First time I heard of being billed for a requisition rather than an actual
test.  I am certain they never got my pap smear as I carried it physically
to U of M to be looked at.  They will call back.  The person I talked to last
time (second time I called) is not in today.

U of M Billing finally figured out that the doctor put down the wrong code
for preventive care.  Meaning I have to call this doctor and try to argue with
the accounting person there who hung up on me last time I called about teh
St. Joe's problem claiming she had nothing to do with it.  Perhaps I can get
the insurance company to phone her and explain how to bill properly?

I expect about 2K of text to come out of the 35K MS files.  Wish me luck.

The doctor does not have email.  The fax machine is turned off most of the
time.  They were out to lunch at 12:30 and 1:00.

I read the 1-page text version of the WORD file and I apparently have
'mucositis (stomatitis - esophagitis)' which can lead to ulceration and severe
infection.  The mucus only started this second cycle.  So it is not just from
having a cold.  Maybe they should discontinue the Doxorubicin which is what
is causing it.  ANother translator in Spain had mucositis.  I had not reported
the mucus as it just started - I cough it up every hour or two after a
coughing fit.  

This information was on the package insert.  The pharmacist did not need to
look it up in Micromed.  I ought to find out just what esophagitis is now.

Stomatitus is an infection of the mouth causing ulcerative lesions of the
oral mucosa. There are lots of causes (infections, trauma, caustics,
regurgitation, etc). Esophagitis is the same thing of the esophagus.

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Tod, do you have ALS?  I've just read about the Desert Storm / ALS
link.  

I wonder if esophagitis can be aggravated by spending too much time lying down
in bed.  One cause of it is gastric reflux which would be treated by reducing
stomach acid using Prilosec but I was taking that when this started.  I will
be spending a lot less time in bed now.  In the hospital the head of my bed
was elevated so I could sleep on my back.  I stopped having to sleep on my
back a few days ago when my ribs stopped hurting (due to pleural effusion -
fluid in the wrong place similar to what was around my lungs).  Elevating the
head of the bed reduces gastric reflux.  The problem developed after I got
out of the elevated hospital bed.

I think I have figured out the many things that went wrong with the billing.

1.  The doctor is supposed to fax U of M the correct diagnosis code for Jim's
lab tests (preventive instead of diagnostic).

2.  We were both billed $7 by the doctor for taking 'hemoccult' (fecal occult
blood) samples but never got any tests done on them.  I had to pay the full
$7 because they billed it as diagnostic instead of preventive - I paid it to
save time instead of money.  Jim's only cost 20% of $3.34 after PPOM discount.

3.  I was billed $38 for a pap smear done at St. Joe's.  Apparently it was
really sent there to be analyzed.

4.  I was given two samples to take to U of M, and told one of them was for
fecal leukocyte smear  (white blood cells in feces) and one was my pap smear.
I submitted them as such.  U of M never billed for pap smear but they did bill
for fecal leukocyte smear.  They did not bill for hemoccult testing.

What I think happened was someone gave me Jim's fecal smear and told me it
was a pap smear.  The doctor forgot to order hemoccult tests for both of us
after taking the smears.  And forgot to give me my pap smear and sent it to
St. Joe's instead.

So I have paid $7 plus 20% of $3.34 (65 cents) for smears that were not tested
for fecal occult blood (one was tested for something else) and my pap smear
was sent to the wrong place, which means St. Joe's is billing me for it and
the insurance won't pay anything, so I suggested that the doctor pay my $38
- 80% of the St. Joe's bill plus $7.65 adds up to $38.65.

How many mistakes did the doctor's office make?

If they don't pay for their mistakes I will notify PPOM that this doctor is
not following the rules.

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I was asking if you have ALS.  I have no idea what 
your response means.  But there is no need at all
to answer the question if, for whatever reason, 
you'd rather not.

Pulse after walking 120.  Pulse 2 minutes after walking 96.  Pulse while
sitting (leaning against pillows, actually) 92.  Pulse while lying down after
having walked around the house a bit - 72 (shortly after awakening).

I had no idea sitting could make my pulse race.

The nursing home (past which we walked on the way to the orchard) has a new
looking garden area with lots of flowers, bird feeders, and seating, and some
memorial concrete 'bricks' with names in them.  Got a few more pears.

Mail that I am sending to umich.edu (two doctors) is coming back to me with
'remote protocol error'.  What is going on?

I found another website with a very long list of side effects of doxorubicin.
Apart from the lowered blood counts, I don't have ANY of the more common ones
(over 5% incidence) such as nausea.  I DO have a couple with under 1%
incidence, lucky me - the laryngitis, voice alteration is listed as such.

I don't know if it is related to esophagitis, hopefully I don't have that.
I feel like my gullet is somewhat swollen.  I wrote the drug company again
to see if they can find out whether this will go away some day.

Other effects are somnolence, insomnia, weight gain, anorexia, constipation,
diarrhea, erthyrodysesthesia and other words I did not look up.  Maybe 100
side effects.

Tachycardia and bradycardia (heart rate faster or slower) and various sorts
of heart damage.  I asked about that too - what are other people's normal lying
down and sitting pulse rates?  Does your pulse go up 20 when you sit up?

(Try forwarding the message, with full headers, to postmaster@umich.edu,
Sindi.)

(I meant the rejection notice, not the original message.)

I've had my recent mail to umich.edu rejected the same way.  They have
a problem.

I had all the mail I sent rejected after that including some to other places.
I will try again tomorrow.

A friend sent me a copy of an Ann Arbor News article about Bexxar, the
radioactive form of Rituxan (sp?) which apparently was approved for general
use this June.  I hope I don't need it but I sure timed things right.  The
article says Dr. Kaminski plays classical piano.

Since I can't send mail through to Bedford Labs I may phone again and ask them
to find out how long the laryngitis is likely to last after therapy ends.

The third batch of pears is doing well.  The tree is out of pears.  Jim says
that our ajvar does not taste like the commercial stuff.  I read him the label
- salt, sugar, vinegar.  We did not add these.

I think the radioactive Bexxar may have been used primarily on patients whose
bone marrow was cancerous.  They have no immune system left (perhaps due to
treatment?) so the regular antibody method would not be of much use since it
simply labels cells for attack by the immune system.  The radioactive form
kills these labelled cells directly.  But only 95% of B-cell lymphoma cells
have the protein needed by the antibody for recognition so neither method
would work on the unlucky 5% of people whose cells don't have that protein.
People are working on another antibody that recognizes another protein.

I read some more about Bexxar.  For a few days to a week after treatment with
this drug (which contains radioactive iodine) the patient has to stay in a
hospital room, either private or shared with another Bexxar patient, with lead
screens around the bed to protect the nursing staff from the irradiation. 
Hospitalization is to protect innocent bystanders from being irradiated by
the patient.  This does not sound like a terribly safe treatment for the
patient but it is better than dying when all else has failed.  

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It might be interesting to do it in a cloud chamber.  

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Some do, but one can make one at home of the diffusion type. It is at
ambient pressure but cooled below with dry ice, and a pad with alcohol on it
is but at the top. 

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http://w4.lns.cornell.edu/~adf4/cloud.html

Jim's neighbor two houses over, who walks to work at the ISR, left a lemonade
cup full of cut flowers from her garden and a card with an offer to pick up
anything we wanted at the food coop or farmer's market.

The drug company that makes Adriamycin (doxorubicin) says they cannot do
anything except send me info from the package insert, and forward symptom
reports to the FDA.  I hope my voice comes back next year.

Today I weigh 101 pounds and the second virus that I have had this month is
finally at the sneezing stage (after five days of intermittent headache,
chills, stuffy head).  I need to get over this before chemotherapy next
Monday.  Jim even turned on the heat to keep the room at 65 degrees.

My lymphoma-inspired high white blood cell count seems to have protected me
from all the colds going around for several years and now it is my turn to
get all of them in a row, I think.  This one has intestinal symptoms, just
what I need when the chemotherapy also has the same effects.

Off to find a handkerchief.

Poor keesan.

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- Backtalk version 1.3.30 - Copyright 1996-2006, Jan Wolter and Steve Weiss