Talk Shows & Stories : Edward Leigh

Eddie: Colon Cancer Survivor

Listen With 19 minutes, 50 seconds

My name is Edward, my nickname is Eddie and that's how you'll hear me being referred to on the rest of this tape. I'm forty-two years old, I live in Cleveland, Ohio, and as a bit of personal information, I'm married and we have three kids, three dogs, and children we're working on that for the future. Because of my experience with cancer, I actually had to take time off from thinking about having children, because they said during treatment, during chemotherapy, I was told it would be best to you know, wait until I'm done with my treatment.

My story actually begins in 1997. I started having I guess the word would be diffuse abdominal problems. I had mild abdominal pain, irregular bowel movements, and I knew something wasn't quite right. At first I thought maybe it was working too hard, I had some abdominal things going on because I'm just so busy and running around. I'm in the speaking business and I have to travel a great deal to do my programs, and I thought that was it. So I decided to see my doctor, and he told me I had irritable bowel syndrome. And basically did nothing more. And I thought, well, that's probably it, from all the busyness I'm always involved with, even though I always took care of myself well, ate well, exercised, got enough rest, managed my stress pretty well. Then the abdominal problems got worse and worse, and I went back to my doctor and he told me I probably have problems dealing with stress, even thought I'm in a field where I teach stress management. I thought that was a bit odd, but he didn't pursue it any more. Then things started getting worse and I went for another visit, and he said, I think we need to do some testing on you. So he scheduled me in May of 1997 for a procedure called a sigmoidoscopy. I had this done in his office, his family practice office, and the sigmoidosocopy proved to be perfectly normal. They didn't find anything. So I assumed that there was really nothing wrong with me, nothing very serious.

Reality check

However, there was actually something very wrong with me. I actually had colon cancer, and the sigmoidoscopy, which I want to emphasize, is not a complete colon exam. The only problem is the colonoscopy is significantly more expensive and sometimes doctors are hesitant to have patients have it because of the cost. But I do want to emphasize that if a person is having symptoms, such as rectal bleeding, irregular bowel movements, anemia, anemia is a red flag for colon cancer, then they should certainly insist on a colonoscopy, because insurance companies will pay for it if there are symptoms. Asymptomatic people, people without symptoms, that's where the problems lay, because insurance companies often won't cover the colonoscopy, only the sigmoidoscopy that misses many tumors. So, as you've heard me emphasize, if you go to your doctor and you're having a sigmoidoscopy, please be aware that it's only a partial exam. And even if you're asymptomatic, you still might want to talk to your doctor about having a colonoscopy just to give you peace of mind. But having said that let me continue on with my story.

I had the sigmoidoscopy done and as I mentioned, it was normal, even thought I had a tumor on the right portion of my colon, which it missed because it only sees the left portion. In 1998 I started to develop rectal bleeding, and this started in April of 1998. The bleeding wasn't just a few drops of blood; it was massive, massive blood loss. It was as if someone had cut a major artery. Blood was actually just pouring right out of me, it was just unbelievable. It was very, very traumatic. And I called my doctor and he initially told me it was hemorrhoids and he told me I was exaggerating, my blood loss, even though it was massive. But he insisted that I was exaggerating my blood loss. In August of 98, I had severe bleeding again and I called my doctor and he said, you have hemorrhoids, nothing to worry about. Then the bleeding continued, it was so massive, I called him again and told him I wanted to go the Emergency room. I went to the Emergency Room and they did a number of tests on me and they discovered I had food poisoning. After they discovered the food poisoning, which actually temporarily affected my liver, but it was short term, they didn't do anything about the rectal bleeding. The rectal bleeding continued on and off until April of 1999, and at that point I had my worst episode of rectal bleeding. And what happened was the blood loss was so massive, it happened about 11:30 in the evening, after my wife had already gone to sleep, and after I stood up in the bathroom after the blood loss, I passed out. And when I woke up, lying on the bathroom floor, I was actually lying in a pool of blood. Then I called my doctor again and he wanted me to have a sigmoidoscopy again, which would have missed the tumor again, but at that point we were in the process of switching insurance companies, and when I switched insurance companies, I thought I had no pre existing conditions. The only thing I knew I had was hemorrhoids.

In August of 1999, I started having some abdominal pains in the beginning of the month. I was due to go to a conventional in San Antonio, so I went to see my new doctors for the first time, because I had a new insurance company. And I told them I thought I was having stomach flu and I don't want to be sick at my convention. I was looking forward to this convention and I didn't want to be sick. So they said I think you'll be fine to go to your convention, but let's do some blood work. They did a CBC on me, a complete blood count, which measures my blood cells and red blood cells, etc. and they said you can go to your convention, and we'll let you know what the results of your blood work are when you come back.

The problem

I went to the convention and I didn't feel well throughout the convention, chronic abdominal pain, and I thought I had stomach flu or an ulcer or something like that. I got back to Cleveland, there was a call from my doctor's office and they informed me that I was anemic. And I thought, abdominal pain, anemia, bleeding ulcer. That's what it was, a bleeding ulcer. And they scheduled me for a colonoscopy. And at this point, I didn't realize there was a difference between a sigmoidoscopy and a colonoscopy. Actually I thought they were synonymous. So I went for the test, and actually my wife was gonna come with me because they sedate you and they don't want you driving back after the test, and I said to my wife, Don't worry about coming, it's an ulcer, nothing to be concerned with, it's an ulcer. And she said are you sure? And I said, why take off time from your work when I have this ulcer thing? So I went with my mom. She drove me down. And they sedated me for the colonoscopy because they actually did an upper GI too, so they had to completely knock me out if they were putting a tube down my throat. So I had the upper GI and lower GI, which was the colonoscopy. When I came to in a hospital bed, the GI doctor was standing next to me and he was holding a photo and the photo was of a tumor, and he said, I'm sorry to tell you, but we've discovered a tumor on your colon and we took a biopsy. We're not a hundred percent sure, but we're almost certain that you have colon cancer, and have to have surgery immediately.

So it was August 18 and I met with the surgeon and that was the official day that I was diagnosed. And he told me that you have what he called adenocarcinoma, which is a type of cancer and that was the type of cancer I had on the colon, and I had to have surgery immediately. So I had surgery on August 26, 1999 and the doctors removed the right portion of my colon, which is known as the ascending colon, they also removed my appendix and part of my small intestine and they removed all the lymph nodes in the area. They removed 17 lymph nodes, and on August 31, 1999, I was informed that two out of the 17 lymph nodes tested positive for cancer. They were positive there was cancer cells in them, which put me at Stage III of colon cancer. Stage I is where it's localized, Stage II is where it invades the muscle wall, and Stage III is where it invades the lymph nodes, and Stage IV is distant spread. I was at Stage III because it had invaded the lymph nodes, 2 out of 17. In September I began chemotherapy with 5FU 5 Fluorouasil and Leukovorin. And they were having a great deal of problems with my veins. Even though when you look at my veins, they look wonderful, but the problem is they were described as veins that when you put the needle in, they move out of the way. And they were having trouble getting my veins so I had to have a port installed in my chest. That was another surgery, minor surgery, outpatient surgery, and this little port is implanted in my chest so they don't have to use my veins in my arms and they go right to this port which actually I prefer. It's much less traumatic, much less painful. And then I continued on with chemotherapy. I actually had two emergency room visits, one for intestinal blockage, and they were able to fix, and one was a potential blood clot in my leg, which turned out not to be a blood clot but I wanted to go in to be on the safe side.

The treatment process

I continued on with chemotherapy throughout August of 2000, and I had six months of the 5FU and Leukovorin and then in the spring I began a new drug. It was much, at first it was much more toxic to my system than 5FU and even with the anti nausea drugs; I still experienced a great deal of nausea. But my side effects were much worse than most, and I don't want people listening to this think it's a horrible drug, because I know many people that took the drug and had minimal side effects, for me it was just a bit more toxic. But I was still able to tolerate it and still able to complete it. And what's exciting about CPT11 is it's the newest colon cancer chemotherapy agent in 25 - 30 years. Before that it was ONLY 5FU and if that didn't do it's job, then we were in trouble. But luckily there IS this new medication and there's also many new medications that are out there, including monoclonal antibody which is immunotherapy, which is an antibody, directed at destroying and killing colon cancer cells. So there's a lot of exciting things going on.

Throughout this whole experience, luckily I did have a number of social support elements. Of course my wife was wonderful throughout the whole, and then she was always there helping me out. And of course we're really in to animals so our three cats and three dogs were a source of comfort and inspiration, and also wonderful friends. Through professional associations that I'm involved with in the speaking business; the outpouring of support has just been wonderful, and also the fact that I'm in the speaking business and I could talk about my story. One of the things that I'm an advocate for is that I just want people to make sure when they're going in for a sigmoidoscopy that it's only a partial exam. I don't want people to not have the test done, because it does find things, it does find tumors and polyps, but only on one side. If you want a complete exam, you have to go for the colonoscopy.

As a matter of fact, I shared my entire story with America. I was on the Today Show on March 9, 2000; Katie Kouric did a week long series called "Confronting Colon Cancer". I was on a segment called "Dispelling myths about Colon Cancer" and people think that if you're young, you won't get colon cancer. That is not true. Even though the majority of cases of colon cancer do occur in people fifty-plus. However, every year, 13,000 people under the age of 50 are diagnosed with colon cancer, and the tragic part is that since all the guidelines are for people over 50, anyone under 50, you have to wait until symptoms. And the problem with colon cancer, once symptoms occur, that usually indicates that the cancer is in an advanced state. Because my cancer, unfortunately, was caught in an advanced stage. Not the most advanced, but it was caught in an advanced Stage III where it had already invaded lymph nodes. So this is a concern about people under 50 who think they're immune, but they're not and they still need to be screened. One of the simple screening tests is called the fecal occult blood test, to look for hidden blood in the stool. Now, that's no guarantee because the tumor may not be bleeding at the time. But at least, it's something that would give people some idea if there were a possibility of colon cancer. So I was on the show to discuss my experiences. The main issue was the fact that I was young and that's why they had me on. And they also wanted me to discuss the sigmoidoscopy. So that, actually that interview is available online if you'd like to read it. Website msNBC.com and go to the little search box and if you type in my full name, Edward Leigh, you can watch the interview in case you missed it, and it will talk about some of the issues related to young people and colon cancer.

What's the catch?

One of the things that I emphasize is that they asked me, what do you want to say to America? And the biggest mistake that I made is that I just completely put all my trust in my doctor. And I'm now saying that we shouldn't trust doctors, I'm not saying that. What I'm saying is that, in addition to having competent, good, solid healthcare professionals working with us, we need to take responsibility for our health care. When we were kids in school and we didn't do our homework, we'd get a bad grade. But when we're adults and in the health care arena, if we don't do our homework, it could kill us. So that's why we have to do our own research. And what I do now, in addition to my wonderful new doctors and new nurses and new healthcare team, in addition to that, I spend at least an hour every day online reading about colon cancer. And when I go for my chemotherapy treatments and I speak to my oncologist, I'm constantly asking questions. What about this? What about that? What about this? What about this? And it's because of my online research that's why I was taking the drug called CPT11, which had primarily been only used for people in Stage IV, or people who experienced a recurrence. But I wanted it as an extra insurance policy. And had I not done my homework, I wouldn't have known about it.

Just to give you another quick example of how doing your homework pays off, is one of the problems I was experiencing with the chemo was chronic diarrhea, and it was just not very pleasant. And I had taken Imodium and unfortunately it did not work for me and I was searching for something else. I went on the Internet and I belong to an online cancer discussion group. I like to think of it as an online support group, also, because we provide support, but we share medical information, we share support information. And one of the ways that you could get on that discussion group for colon cancer for other types of cancer by going to ACOR.org and there are many discussion lists related to different types of cancer, and that certainly has been a godsend. So what I did was I posted a note to the website asking for help with this chronic diarrhea, and someone suggested Lomotil. I talked to my oncologist, she wrote me a prescription for Lomotil, after the first does, the diarrhea was taken care of. But had I not done my homework I would not have known about that that's why it's important that we do our own homework in terms of finding what we could do to take care of whatever issues we are dealing with.

Personal growth

In terms of where I'm at right now, is I had my final chemotherapy treatment on the 28th of August. I go for a week and then I'm done and then I'll be monitored for the first few months, every month, and then after that, I'll be having tests done every three months. One of the critical tests for people with colon cancer is the CEA and that measures the level of cancer activity in the body, so that's a blood test and I'll be having that done, and I'll be having periodic CAT scans to you, hopefully to make sure that I'm clear so that will be where I'm at right now. But in terms of wrapping things up, in terms of some words of wisdom is the emphasis I want to place is on being our own health care advocates. We can no longer simply just put everything on our doctors. And I do emphasize that it's not that we don't trust doctors, it's certainly not what I'm saying, it's just that doctors can't spend hours and hours every day just on us. And many many patients. Doctors have hundreds of patients but we only have one life. That's why we have to do our homework, and that means reading, that means going to the library, that means talking to other people, doing our online research. And we have to make sure that we are reading legitimate research because unfortunately in the cancer care field, there are people who make wild claims about eating certain things or doing a certain procedure. So we have to make sure we're getting legitimate information and that's information from the National Cancer Institute, the American Cancer Society, we have to make sure we're getting legitimate information. So that's the major point that I want to emphasize is that we must be in charge of our health care.

As a result of having being diagnosed with colon cancer, in terms of how it affected me on a psychological level, I feel like I certainly live my life differently now, and the way I live my life differently now is that I'm actually not so rushed. I was constantly feeling rushed, I'm one of these very ambitious type people, I like to get things done, do things and always achieve, so now I'm taking things a little slower. And I realize now that I've missed a lot along the way, and just little things, like my wife spends a lot of time in the garden, and I was always rushing in and out the door. And a few days after I was diagnosed, I went out to get the newspaper like I do every morning when I'm in town because I have a pretty hectic travel schedule. So when I'm in town, what I do is I pick up the paper and I race back in and just start reading it and then do all the other things I do in the morning. And this particular day, as I was walking back in, I suddenly saw all these flowers. And my wife had been working on them for a long time and I was just so busy that I missed them. So I spent fifteen minutes just smelling all these wonderful flowers and looking at them and thinking how wonderful everything looked. And now I spend a lot of time going to the lake, we have a wonderful lake here in Cleveland and I spend time at the lake, or we'll go trails. We'll walk with the dogs, and I just feel that a lot of things have passed me by because I was always just so busy, and now I'm taking things a little slower and just appreciating things that I felt I missed before. So there's not many good things about cancer, but it just shakes you into a reality that you have to appreciate things while they're here, so that's what I have certainly learned with being diagnosed.

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