From: Hetherington, Orland <orland@gtn.net>
To: cancer@via-media.com <cancer@via-media.com>
Subject: Kent-Hello
Date: Monday, July 27, 1998 11:39 AM

Dear Kent,
    Nice to meet you. I wish more people with leiomyosarcoma had web
pages. I spent two years trying to find others with lms. I'm Orland I
live in small town Ontario , Canada (Lucan). I have a high grade
leiomyosarcoma. So far I've only received several surgeries. My
leiomyosarcoma seems to prefer my abdomen to date. In 1996 they gave me
6 months to live but I've been lucky . Here's my story to date.
    For many years (ballpark 10-15 years) I had been having discomfort
which had been getting worse in my left side when I laid down on my left
side. Additionally, I was having increasing problems with indigestion
and pain and nausea with some foods like chocolate that increased over
time. I never drank much maybe once or twice a year but I found in the
years prior to my diagnosis alcohol would give me pain and extreme
discomfort for days after. When I'd lay on my left
side I'd become nauseous with a feeling of pins and needles/millions of
worms crawling around in my abdomen but only when I'd lay on my left
side. This built over a period of maybe 15 years until finally I
wouldn't lay on my left side at all. I was told "don't lie on your left
side" etc . I eventually had a colonoscope which showed nothing as
the tumor was higher up in my small intestine. GRrrrrrrrrrr.
    In the Spring of 94 I had a GI bleed (gastrointestinal) that
wouldn't quit. I went into the hospital for tests which showed
nothing. Also had several units of blood. My GP thought it was a
duodenal ulcer. One Doctor in the hospital (a major one) thought it
wasn't a bleed at all but darkening of the stool from peptol bismol
(despite the fact that I needed and was given a couple of bags of
blood). The other Doctors there knew it was something but couldn't
tell what it was .
    In September 1994 I had another major GI bleed. They ran the usual
tests plus a few more with no results (scopes down both ends with tubes
of different lengths, Mendels diverticulum test, other tests with
isotopes in my blood, ultrasound, small bowel follow through). They
were going to send me home and we asked them not to . I'd been lucky
with the first two bleeds as I was close to a large city when they
happened (London,Ont., Canada). They decided to try more tests. The
one was an abdominal angiogram. It showed the tumor. Once they knew
where it was another small bowel follow through was done which somehow
showed it this time. Two days later they removed the tumor along with
a couple of feet of jejunum. While I was in the hospital my Mother
passed away and a crazy women who thought we going to get married
decided to move into my other house near Niagara Falls. With all that
was going on with the funeral and getting the police and psych hospital
to remove this woman from the house, I had an ilius (intestine shuts
down and won't open). Back to the hospital for another NG tube and a
week or two. Once home after the ilius I could barely walk 50 feet. I
built from that.
Once that was over I went back to work. My Surgeon told me he
got it all and not to worry . I asked for a referral to an Oncologist
and the cancer center and scans. He said no, I didn't need it. Just
to be on the safe side , I asked my GP for a referral to the cancer
center which he did. They began doing CT scans every 3 months.
In November 1996 , my CT report came back positive with peritoneal
seeding / sarcomatosis. Soon after I was told I had 6 months to live
(Jan to June).
    I went back to the original surgeon who said once again he got it all
and wouldn't do surgery as it wasn't cancer. Go figure. Whew. I went to
another surgeon in a different city who did a needle biopsy and spiral
CT who said it was sarcomatosis and surgery wouldn't buy me more time ,
chemo and radiation wouldn't help. The path report confirmed high
grade. I've been told that staging is irrelevant in my situation. He
said once I was palliative with GI bleeds / obstructions he was willing
to operate then. He sent me home and said this is the best your going
to feel so enjoy your time. I tried another surgeon=NO etc. etc. My
Oncologist sent me to another local Surgical Oncologist who was willing
to operate. We talked about it not being curative but the possibility
of it extending my time. Hopefully in the meantime new treatments
would unfold . The goal was set to live to see my daughter get on a
school bus. I had the surgery in April 1997. I had a wonderful surgeon
who removed 5 abdominal tumors , unkinked an intestine, and removed
adhesions . The first post op CT's read something like ,metastatic
tumors . Didn't mention peritoneal seeding or sarcomatosis this time.
It read fewer tumors but in the same place. When I came home in May 97
I could barely walk 500 feet. I decided to fine tune my nutrition,
alternatives, juicing and exercise.
    I built up day to day ( overdoing it ) to where I was walking 5 km's
4 or 5 days a week, 2 to 3 days a week I lifting weights in my
basement, and 2 to 3 days a week doing a 35 minute pulse rate workout
where I get my pulse up to about 145-153 and held it there. Around
January I had to back away from it with some GI and respiratory flu's.
I'm overweight, always have been, eat like a horse but went to more
of the right things .
    In April 1998, I once again had surgery. At this time, they removed 8
tumors, did a small bowel resection, removed his greater Omentum and
adhesions and repaired an incisional hernia. Shortly after getting home
I had a problem with severe vomiting to the point of throwing up fecal
material along with extreme abdominal pain. Probably a small ilius or
small intestine getting caught and kinked in there. In the ER I was
given gravol and some morphine.
    My post op CT with oral gastrograffin and IV isotope of Iodine once
again shows peritoneal seeding. I keep copies of the scans. They have
lots and lots of grease pencil marks indicating possible tumors. I'm
hoping some of it will be post op etc. I'll be seeing my Surgical
Oncologist and Oncologist in a couple of weeks. I am presently
attempting to persuade my OncoDoctors to consider chemotherapy once I
loose my Surgeon.
    Shortly I will restart building for any future treatments or surgeries.
Some medical suggestions are don't overdue it and just enjoy your
time. I'm in a fight though. Some days I get really tired even
when I don't do a workout. But I found in the past that fatigue got
less and less with exercise, nutrition and sleep. I'd like to add that
I'm extremely grateful to my surgeon from 94 for what he did then, to
my GP who is hanging in there for me , my Oncologist, Oncology Nurse
and especially to my new Surgeon who's willing to try it despite
things.
    Doctors have different opinions. In the long run that's good for us.
It gives us more choices.
I live in Lucan, Ontario Canada with my 2 and one half year old
baby girl Brianne and my wife Mary Lynn. I enjoy: playing with Brianne,
getting as much exercise as he can to get ready for future
surgeries/treatments, photography, videotaping, traveling when
possible, using computers (net and mailing lists) and slaying dragons. I
am still considered terminal and on borrowed time, but enjoy life. I am
also a CO-owner of the Sarcoma Cancer Electronic Mailing List and an
adjunct CO-owner of the L-M-Sarcoma Cancer Electronic Mailing List (both
non profit).
My short term goals include being able to see my daughter get on a
school bus, trying out some of the new antiangiogenic drugs, slaying the
last dragon, and getting back to the office or a new one . My mid term
goals include retirement in the year 2030 and having more children.
    Sorry this went on for so long.

        Take care and God Bless,

                    Orland

        "HOPES AND DREAMS REIGN WHERE CANCER CANNOT GO"

            _____________________________

            Orland Hetherington    

            orland@gtn.net

                ____________