Last Modified: November 1, 2001
Copyright © 1998, Orland Hetherington
For many years (ballpark 10-15 years) I had been havingdiscomfort which had been getting worse when I laid down on my leftside. Additionally, I was having increasing problems with indigestionand pain and nausea with some foods like chocolate that increased overtime. I never drank much maybe once or twice a year but I found in theyears prior to my diagnosis alcohol would give me pain and extremediscomfort for days after. When I'd lie on my left side I'd becomenauseated with a feeling of pins and needles/millions ofworms crawling around in my abdomen but only when I'd lay on my leftside. This built over a period of maybe 15 years until finally Iwouldn't lie on my left side at all. I was told "don't lie on your leftside". I eventually had a colonoscopy which showed nothing as thetumor was higher up in my small intestine.
In the spring of 1994 I had a GI bleed (gastrointestinal) thatwouldn't quit. I went into the hospital for tests which, showed nothing.I 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 atall but darkening of the stool from Pepto Bismol® (despite the factthat I needed and was given a couple of bags of blood). The otherdoctors there knew it was something but couldn't tell what it was.
In September 1994 I had another major GI bleed. They ran theusual tests plus a few more with no results (scopes down both ends withtubes of different lengths, Mendel's diverticulum test, other testswith isotopes in my blood, ultrasound, small bowel follow through). They were going to send me home and we asked them not to. I'd beenlucky with the first two bleeds as I was close to a large city whenthey happened (London, Ont., Canada). They decided to try more tests.The one was an abdominal angiogram. It showed the tumor (leiomyosarcoma of the small intestine).
Once they knew where it was another small bowel follow through was done whichsomehow 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 myMother passed away and a crazy woman who thought we going to get marrieddecided to move into my other house near Niagara Falls. While all that was going on with the funeral and getting the police and psych hospitalto remove this woman from my house, I had an ileus (intestine shutsdown and won't open). So I went back to the hospital for another NG tube and aweek or two of rest. Once home after the ileus I could barely walk 50 feet. Ibuilt from that.
Once that was over I went back to work. My surgeon told me hegot it all and not to worry. I asked for a referral to an oncologist atthe cancer center and scans. He said no, I didn't need it. Justto be on the safe side, I asked my GP for a referral to the cancercenter which he did give me. They began doing CT scans every 3 months. In November 1996, my CT report came back positive with peritonealseeding / sarcomatosis. Soon after I was told I had 6 months to live(Jan to June 1996).
I went back to the original surgeon who said once again he gotit all and wouldn't do surgery as it wasn't cancer. Go figure. Whew. Iwent to another surgeon in a different city who did a needle biopsy andspiral CT who said it was sarcomatosis and surgery wouldn't buy me moretime, chemo and radiation wouldn't help. The path report confirmedhigh grade. I've been told that staging is irrelevant in my situation.He said once I was palliative with GI bleeds / obstructions he waswilling to operate then. He sent me home and said this is the bestYou're going to feel so enjoy your time. I tried another surgeon, he said no also.
My oncologist sent me to another local surgical oncologist who waswilling to operate. We talked about it not being curative but thepossibility of it extending my time. Hopefully in the meantime newtreatments would unfold. The goal was set to live to see my daughterget on a school bus. I had the surgery in April 1997. I had a wonderfulsurgeon who removed 5 abdominal tumors, un-kinked an intestine, andremoved adhesions. The first post op CT's read something like, metastatic tumors. Didn't mention peritoneal seeding or sarcomatosisthis time. It read fewer tumors but in the same place. When I came homein May 1997 I could barely walk 500 feet. I decided to fine tune mynutrition, 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, lifting weights in mybasement, and 2 to 3 days a week doing a 35-minute pulse rate workoutwhere I get my pulse up to about 145-153 and held it there. AroundJanuary I had to back away from it with some GI and respiratory flus.I'm overweight, always have been, eat like a horse but want to do more of the right things.
In April 1998, I once again had surgery. This time, theyremoved 8 tumors, did a small bowel resection, removed the greateromentum and adhesions and repaired an incisional hernia. Shortly aftergetting home I had a problem with severe vomiting to the point ofthrowing up fecal material along with extreme abdominal pain. Probablya small ileus or small intestine is getting caught and kinked in there. Inthe ER I was given gravol and some morphine.
My post op CT with oral gastrograffin and IV isotope of Iodineonce again shows peritoneal seeding. I keep copies of the scans. Theyhave 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 surgicaloncologist and oncologist in a couple of weeks. I am presentlyattempting to persuade my OncoDoc's to consider chemotherapy once Ilose my surgeon.
I do take several alternatives. Most are an assortment of vitamins /minerals. I also use guided imaging, music therapy, and exercise.
I've started building for any future treatments or surgeries.Some medical suggestions are; don't overdue it and just enjoy yourtime. I'm in a fight though. Some days I get really tired evenwhen I don't do a workout. But I found in the past that fatigue gotless and less with exercise, nutrition and sleep. Immediately post-opsometimes I can barely make it fifty feet. It's a very slow build upuntil I can cross train-using weights, pulse rate workouts (stationarybike/treadmill with monitors), and outdoor walking.
I live in Lucan, Ontario Canada with my 2 and one half yearold baby girl Brianne and my wife Mary Lynn. I enjoy: playing withBrianne, getting as much exercise as I can to get ready for futuresurgeries/treatments, photography, videotaping, traveling whenpossible, using computers (net and mailing lists) and slaying dragons. Iam still considered terminal and on borrowed time, but enjoy life. I amalso a CO-owner of the Sarcoma Cancer Electronic Mailing List and anadjunct CO-owner of the L-M-Sarcoma Cancer Electronic Mailing List (bothNon-profit).
My short-term goals include being able to see my daughterget on a school bus, trying out some of the new anti-angiogenic drugs,slaying the last dragon, and getting back to the office.My mid-term goals include retirement in the year 2030 and having morechildren.
I'd like to add that I'm extremely grateful to my surgeon from1994 for what he did then, to my GP who is hanging in there for me, myoncologist, oncology nurse and especially to my new surgeon who'swilling to try it despite things.
HOPES AND DREAMS REIGN WHERE CANCER CANNOT GO"