Colorectal (Colon) Cancer Videos - Jeff A



Colon Cancer Survivor JeffC

Watch as Jeff A takes us through his journey with Colorectal Cancer.

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Video Transcription

Dealing with Anxiety

I definitely had some anxieties. Of course anybody would, when you get the news that you've been diagnosed with cancer. I would say that for somebody who was an absolute coward, of cancer, and terrified of it in the beginning, and before I was diagnosed, I didn't have as much anxiety or depression as I thought. I think a lot of it is because I'm very religious, and I turned to God right away. It really calmed me, and I felt all along that I'm a fighter. With my beliefs, that I was going to beat this one way or another. I also did a ton of research on the internet and got very much into alternative diets, mostly vegan diet, and supplements, and looking at other natural ways that it can help suppress the tumors from growing and spreading. That helped a lot. I also spent a lot of time on the internet learning about all the conventional therapies and the conventional scan schedules, blood tests, tumor markers, anything that I could find out about cancer in general, colon cancer, and Stage 4 colon cancer. It really empowered me and when I was going in and speaking with the doctors, I knew what I was talking about, they knew I knew what I was talking about, and it gave me more of a sense of control, which really helped a lot too, to feel like I was in control of the situation.

Change in Appetite

I didn’t really experience any kind of change in appetite, in general when I was going through treatment. When I was actually having the treatments I really didn’t want to eat at all. I had to force myself to eat. Sometimes my wife would beg me to eat, just because I was feeling so sick to my stomach, and tired, and just such a lack of appetite. And when I was actually on the treatment it was the start-- things tasted funny. My mouth had a metallic taste to it, which I’m sure was the oxaliplatin, being that it’s platinum-based. But in the week and a half in between each round of treatment my appetite would come back. The stomach problems would go away. Most of the taste would come, things would start to taste more normal again. So my appetite really picked up, and I ate fairly normally in between the rounds of treatment.

Coping with Change

I really like to do interviews like this and be very active in different forms. In other colon cancer websites and be very outspoken about my experiences. I felt like, you know I'm a long-term stage 4 survivor; it's been over seven years now, and I've been through a lot., most everything, and have, I feel handled it very well. I really like to use my experiences to try to help others, to give them inspiration, and hope, and empower them, and to give them advice anyway I can, if other colon cancer survivors are interested in hearing my advice. What it does for me personally, it gives me the sense of reason or purpose for why I have survived this long, why I still believe in my heart and soul whole-heartedly that maybe I won't actually beat this, but I will not die of it, and it might be hard for some of you to believe considering the odds of stage 4 colon cancer, especially since I've been through it three times, but there's a lot to be said for the power of the mind as well. But again, I feel like if I am going to beat this thing or be around a very, very long time, there has to be a purpose for it, and to me that purpose is for me to spend as much of my experience and time and knowledge from what I've gone through to help others.

Financial and Out of Pocket Costs

As far as cancer impacting my life economically I was very fortunate again there, too. I have a great insurance policy, great employers, I'm still with the same company that I was for many years before I was even diagnosed. And in fact every time that it's come back on me not only did they say I'll have a job when I come back and I can take off as much time as I need, but they have paid me through the entire time and on top of that, you know, about four years in the midst of all this my wife and I decided to start a tailor shop dry cleaning business which has really taking off. So I am one of the very, very few blessed ones that economic impact is not really affecting me. I mean sure I've had a lot of big bills and copayments from all the doctors, the scans and procedures but because of the insurance and because of our financial situation and being able to work and getting paid when I can't work it hasn't impacted me at all. So I consider myself very lucky but I know there's many, many, many other people out there who dealing with cancer who aren't nearly as fortunate.

Gifts for Cancer Patients

I have to say that the biggest gift, and you'll hear a lot of other survivors say from colon cancer, you really, really learn how to appreciate life. Appreciate the things around you, the things that you have, and you learn much more so to life in the moment, and realize that there's so many other things in life that you made a big deal out of before or were a big deal to me, and then would stress me out, that really are absolutely meaningless. Because you get through them all and it's nothing compared to battling and surviving cancer.

Life Before Cancer

I was a very busy person before I had colon cancer. I was in the process, my wife and I, of building our dream home. The thing about it was that I had a full time job as a cabinet maker, and I was doing all the millwork in the house myself. We also general contracted the house, did the porches, did all the land clearing and the landscaping ourselves, basically working seven days a week and 12, 13 hours a day when I could. I was an avid mountain biker too, so I squeezed in as much mountain biking as possible before I was diagnosed. Very grateful that I was able to get the house done before I knew that I had colon cancer.

Cancer Limitations

All the things that I love to do, I have done, and then some. I've mentioned, I did white water kayaking. It's something I didn't do before colon cancer. The mountain biking is something I was doing before colon cancer, but I do much more so now. I do much more miles than I had in the past, and in better shape than I've ever been in my life. So I've not let it hold me down. I've been very fortunate in that way. That I was in shape before it, all that is happening now, because I've used it as motivation to being even in better shape than I was before I was sick.

Lowest Point

I have to say for sure that the lowest emotional point for me was actually when I was still in the hospital for this last surgery back in December of 2011. The initial diagnosis of the cancer, and like I said, I coped with it very well. The first reoccurrence I had, which is about a year and a half later, after that was pretty tough; but it was definitely harder than the first time. And I’ve learned that it seems like every time you hear the words that you got cancer it’s harder than the previous time. But that wasn’t that far after it, so I wasn’t really out of the danger zone. Then after that, I went four years before they found this tumor back last year. And that was devastating. I really thought I was in the clear, you know, going for years without any kind recurrence. And I had just finally gotten to the point of doing scans every year. Went for years which every three months and then eventually went to every six months. So it really, it literally rocked my foundation. It was devastating and I pulled myself together to deal with the surgery, which was a big one this time. They took the entire right lobe. The tumor was so big that it had attached to my diaphragm, my abdominal wall. So I lost, they cut out a little bit of my diaphragm, little bit of my abdominal wall. And obviously I lost my gallbladder too since they took out the right lobe of the liver. So it was a much bigger operation to get over. In fact, I was in the hospital for seven days. And there was a point when I was in the hospital, I remember telling my wife and my father that, you know, maybe it’s just time to give up. I think a lot of that wish is the size, the enormity of the surgery, the cancer really catching me off guard this time. And also a lot of the drugs too. You get so doped up on morphine in the hospital after these surgeries. But I do remember that clearly in my mind, that absolute low rock bottom point. Which is completely turned around since then. And now, you know, my philosophy, or motto, is that I’ve just started to really fight now. I was fighting before, but now I’m really fighting. Now I really know, truly know, what I’m up against. And I’m pulling out all the stops and doing everything that I can mentally, physically, emotionally, spiritually to beat this thing.

Metastases

When I went to see the surgeon he scheduled an emergency surgery five days later, and he set up for me to have a CT scan the following day before surgery. So I had the scan done, and the morning of surgery when they were getting ready to send me into anesthesia, the surgeon came in to talk to me for a minute before they were going to put me under. And he said that unfortunately the CT scan showed one small spot on the right lobe of my liver, which meant most likely the colon cancer had spread, which means that I was stage four. I went and had the surgery, and got out of surgery, and he said the tumor inside my colon was colon cancer, and the biopsy that he took on my liver was the same colon cancer that had spread there, or metastasized.

Perspective on Life

Cancer did change my perspective on life. I think I've touched on it a little bit; before that certainly, it certainly leaves me to live more in the moment. It's taught me especially just recently, after all these years of dealing with cancer, that pretty much anything else that goes on in my life is not that big of a deal. What I've started to say to myself now, when things get stressful or things go wrong at work and I want to get upset about it like I've done my whole life previously, I say well at least I'm not sitting in a chemo chair getting chemo. So when you put it in that kind of perspective, there's really not much that life can throw at you that is really all that bad when you compare it to going through chemo and going through the brutal surgeries and treatments that are all associated with being a cancer survivor.

Place of Care

My chemotherapy I received was at Virginia Oncology, which is only about 15-20 minutes from my home. They're a very good organization, very good people to deal with, and the doctor was fantastic. He had great bedside manner, always cheerful, always asking about how my family was doing, how I was doing of course, and he always had the positive attitude. He was never giving me odds of how long I was going to live or if I was going to live, if there was any chance of beating this, or anything like that. His approach was always that he thought or hoped that he could cure me because of the fact that it was operable and it was just one isolated tumor at the time in my liver.

Questions for Doctor

I mentioned before that I really empowered myself to learn a lot about all the traditional Western therapies, guidelines for scans depending on your stage of cancer, different type of surgeries, procedures, as much as I possibly could learn, and I'm still constantly studying on the Internet, and learning more things. I feel that's very important to empower yourself, and then to use that knowledge to come up with a list of questions. Write them down and go in when you see your doctor. I can't say of any questions in particular I would ask. I think that's something you would find out for yourself as you did research, and depending on the type of cancer you have, and the stage that the cancer is, and what stage your treatment you're in, to help formulate these questions. But I did learn that it's very important to right them down because every time you go in there you can get so overwhelmed to see the doctor, depending on the discussion, and the news, and the situation it can be such an information overload. It's better to be prepared and have it written down and write down the doctor's answers as well.

Quotes

The one song that's really stuck in my head is the Tim McGraw song, "Sky Diving". I don't know how many of you have heard that, but it's basically about a person I think that's dying of cancer, and he says that he hopes that people learn to live like they were dying. Go out and do things, and be adventurous, and just hence the term "Sky Diving". That's definitely the way I live my life with all the mountain biking, and over the last couple years, I've also gotten heavily into white-water kayaking. I like to weight lift too so I keep myself in very good shape and I like to be adventurous and on the move at all times.

Side Effects

I would say the biggest side effects from doing the FOLFOX was the neuropathy. Basically you get a lot of, I call it, pins and needles, and numbness in your fingertips and in the bottom of my feet, and a very strong sensitivity to cold. I couldn't take anything out of the refrigerator without my hands stinging really bad; I couldn't drink or eat or swallow anything that was cold out of the refrigerator. I had to let it warm up to room temperature, otherwise it gives you the sensation of like your throat closing up. So that was kind of tough to deal with. But as time went on, you learn to remember things like that and how to work with it. I did have a lot of stomach problems. No vomiting or anything like that, but definitely felt pretty sick to my stomach and kind of under the weather through each treatment. But the big thing was that after each treatment, I would usually get done and had the pump taken off on Friday of the week of treatment, and by Sunday or Monday I was back on my mountain bike and riding again. I just felt that mountain biking, and staying active, and forcing myself through all of this would really help.

Conditions and Treatments

My current state of stage four colon cancer, I would consider to be in remission, because, again, I'm kinda skipping around a little bit, but I just had my second recurrence that last December in 2011 and had surgery. Every time that I've had cancer show up in my liver, which is three times now, I was always blessed enough to be operable. They cut it out. I did go through the chemotherapy every time after just as what they call a mop-up procedure. The theory is that even though they can't see any visible cancer, that if there's anything microscopic floating around, that the chemotherapy at that time is more effective and there's a better chance of killing off the small individual cells. And since I stopped my last 12 rounds of chemo, which was this past June, I had another CT scan, which was still clean since my previous surgery. I'm scheduled for another one in January, but in the meantime, I consider myself in complete remission because the two subsequent scans after they found the last tumor were all clear. So I consider that remission or NED, which is a better way to put it. A lot of cancer patients use that term, which is "no evidence of disease". Which is a better term than remission because I don't know if it's necessarily remission. Remission to me means the cancer has backed off. I don't know if it's backed off. It's just that at the moment it's either that I'm fortunate enough and they finally cut it all out this time, or that the cancer is just kind of hiding out. That's the way I look at the disease. It's a very sneaky disease, and it can just show up all of a sudden. In fact, this last recurrence, it took four years for it to show up again. So to me it's very sneaky.

Symptoms

The thing that led me to my diagnosis was maybe a month after we moved into our new dream home, I started having really bad cramps in my lower intestine. At the time I didn't know it was my intestine. I was calling it my lower abdomen. But very bad stabbing pains, especially in the morning, sometimes so bad that when I would get up out of bed, it would just literally drop me down to my hands and knees in excruciating pain. So I went to my family practitioner, and I explained to him my symptoms, and he thought it was just irritable bowel syndrome because of my age. I was only 41 at the time, and he gave me some muscle relaxers and said to see him in a month. I went and got the muscle relaxers, and things just kept getting worse over the next week, so I called him up, and I said "It's not doing any good," and I insisted on a colonoscopy. About four weeks later, I had the colonoscopy, and they couldn't even get the scope all the way up inside of me due to the tumor. It was so big that it was almost completely blocking my intestine. So from that point, he scheduled for me to meet with a surgeon. He was pretty sure it was cancer, but either way, because it was almost blocking everything off, I had to have surgery no matter what.

Treatment Decisions

After my colon surgery, I was out of the hospital in about three days. I was up walking around again and went to see the oncologist the following week to discuss my future. He felt that, you know, I definitely had to go through chemotherapy, which was going to be full fox plus Avastin, which means to 5 if you pump for 46 hours plus oxaliplatin, which is a platinum-based chemotherapy, and then Avastin, which is a a targeted biological drug that is supposed to theoretically cut off the blood supply to the tumors. In the meantime, he set me up with the name of the surgeons. I couldn’t go back to my original surgeon, which is in Williamsburg because the hospital just wasn’t big enough for a liver surgery. So he sent me up to VCU in Richmond, which is a NCI-accredited hospital, to set up an appointment to have consultation about possibly having surgery on my liver. I had met with the surgeon, a fantastic surgeon. He’s head chief of the whole surgery department there and has been doing this for over 35 years. He said he could operate on the liver, so we set the appointment for December 16th of that year, which was in 2005. I went in and had the surgery, tolerated it very well, was out of the hospital in three days and on my way to recovery. In the beginning of January, I had a PICC line put into my right arm and by the middle of January I was now starting one of my first of 12 rounds of chemotherapy. I got through all 12 rounds without any kind of real problems or complications. All my subsequent scans, CEA testing, everything, were all normal. Scans were all clean, so I have to do my scheduled 12 rounds of chemotherapy. I was cleared to go by the doctor, and he took the PICC line out of me.

Patient Doctor Relationship

The relationship between me and my oncologist was always fantastic. Although on this recurrence I decided to change oncologists. It was nothing against him or the way he was treating me. It was more that I wanted to take an integrated approach and go with an oncologist that was at VCU, the same hospital where I was getting the liver surgeries done. Because of that, I met with my surgeon, who’s done the three liver resections on me, which I have a great relationship with. I asked him to recommend an oncologist there and he recommended an oncologist who turned out to be fantastic. Now, this way I can get my surgeries done there, get my treatments done there, have my port put in and taken out and maintained, and my scans all done in the same hospital. And they’re all on the same network, and all the doctors and radiologists are communicating with each other, so I feel that’s a much better approach.