Orland Hetherington – High Grade Leiomyosarcoma Of The Small Intestine
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 was, “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 1994 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. 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 you’re 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 lifted weights in my basement, and 2 to 3 days a week I did a 35 minute pulse rate workout where I got my pulse up to about 145-153 and held it there. Around January I had to back away from it because of some GI and respiratory flus. 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 Iodine contrast 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 OncoDoc’s to consider chemotherapy once I lose my Surgeon.
I do take several alternatives. Most are an assortment of vitamins and minerals including 4 to 8 gm buffered ascorbic acid a day, herbal blends and teas (essiac,taheebo), an extract from shark cartilage, ginseng, echinacea, astralagus, a ginseng concentrate, Co-enzyme Q-10 (post op), Folic Acid (post op), milk thistle, imaging, music therapy, and exercise.
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. Immediately post op sometimes I can barely make it fifty feet. It’s a very slow build up until I can cross train using weights, pulse rate workouts (stationary bike/treadmill with monitors), and outdoor walking.
I live in Lucan, Ontario Canada with my two and one half year old baby girl Brianne and my wife Mary Lynn. I enjoy playing with Brianne, getting as much exercise as I 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.
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.
“HOPES AND DREAMS REIGN WHERE CANCER CANNOT GO”
Sadly, Orland died in the Summer of 1999. Although cancer took his life, he outlived his prognosis by a great deal and in the process helped many people. I hope his story is still doing that, and that it will stand as a monument to “where cancer cannot go.”
Orland is co-owner of the SARCOMA mailing list and adjunct co-owner of the L-M-SARCOMA mailing list.
These lists are two of the many cancer related mailing lists hosted by The Association of Cancer Online Resources and are non-profit and free to join.
This CancerGuide Page By Orland Hetherington. © Orland Hetherington
Last Updated: Oct 1, 1999