I have stage 4 colon cancer.

Like most people we are affected by cancer somewhere in our lives. Loved ones, friends and acquaintances. But it always felt like this happened to someone else. Somehow this didn’t apply to us as individuals. Whether we didn’t think of that reality or we didn’t want to but of course we were relieved it wasn’t us. As selfish as that sounds, its the truth and it should be. Be fortunate its not you.

I was this person for 36 years. Living amongst a deadly disease I didn’t equate into my own life. I had two uncles from both family sides pass away from cancer in their 60’s and a paternal grandmother who battled colon cancer in her 50’s but lost to chemo and lung cancer in her 70’s.  But I was in my 30’s, cancer wasn’t on my personal radar.

So what happened? Wow, would I love to have the answer to that question. You could run the course of my life and speculate “maybe this, maybe that” but the truth is no one knows. I call it winning the shit lottery. It doesn’t discriminate and there is nothing fair about it. A good diet helps, no question. And removing toxins and not lacking nutrient deficiencies is key to prevention. I read it all and I do believe that. I could have been better, but I wasn’t horrible in comparing myself to the majority of people who DON’T get cancer.

So, in the interest of curiosity, I will add in some of the “what could I have done better”.    First, to clear up I am a non-smoker. Always have been. But I have been in the restaurant business since I was 15. Working in smoking environments for years as a bartender and some were so bad I had to shower afterwards in attempt to remove the smell. Was I happy when they finally banned smoking.

I enjoyed my beer. Especially in my 20’s. I wasn’t an alcoholic or anything but being in the bar business I had a least 2-3 beers a day with the weekends becoming a piss up. But again, this wasn’t unusual in my surroundings and none of my friends have cancer. Slowed the drinking in my 30’s but still enjoyed beer, wine and scotch.

I worked in a oil and gas research facility for a year. We worked with mercury and hydrogen sulphide (H2S or sour gas) where regular pee tests where done to check our mercury levels. I was never over the “limit” but I was always elevated. It worried me and of course my doctor at the time suggested getting out of there. So ultimately that’s why I left. I doubt this had any impact, but I mention it as its something I have thought about.

One of the factors that doctors suggest lead to cancer is chronic inflammation. This is probably my biggest “theory” of why things went haywire with my DNA damage. Probably around 13 or 14 I started getting pain in my stomach. I didn’t see a doctor about it right away, but I drank a ton of milk as it seemed to be the only thing that would help. It slowly got worse over the next 2 years and I would drink up to 2 litres of milk a day simply to get relief from the pain. Then of course in my late teens when I started drinking alcohol it made it worse. When I finally saw the doctor around 16 I tested positive for the H-pylori bacteria and took the meds for it. It never disappeared but it helped. Slowly it got worse over the next few years and went for another test and came back H-pylori positive again and back on the meds. I did one more H-pylori treatment before finally being sent for a endoscopy. (camera through the mouth) It confirmed an duodenal ulcer and I was put on a drug called pantoloc. With this and altering my diet I managed this till I was in my 30’s where I took the meds only as needed and in the past 4 years not at all. But for years I lived with this chronic inflammation.

Other than these few things my life was pretty normal. I had a physical every year since I was 20 and other than the H-pylori, there were never other concerns. I did have surgery on a fractured tibia/fibula in 2000, a bone graft in 2003 to repair the fibula that never healed and arthroscopic shoulder surgery in 2006.

CANCER INVADES. Well, it was probably around winter of 2010 and I started to notice some bright red blood on the toilet paper after going to the bathroom. Its frequency slowly increased and I finally went to the doctor. Didn’t do anything then, just said to watch this and don’t do this. It kept up and I went back some months later as there was a little blood now every time I went to the bathroom and it would sting a little too. He gave me the moon river, didn’t feel anything, but he prescribed suppositories. That was fun 😦 … but it did nothing. I was starting to get frustrated with this condition and my doctor’s lack of concern. (I could write a full page of my experience, positive & negative, with our medical system but maybe for another time)

By the fall of 2010 and still rectally bleeding, I started to get these very strange episodes. First, it would start off with that feeling in the morning that you need/want to stretch. But this feeling would last an hour, couldn’t be satiated and it could happen at anytime. Once that was done, I would get cold, shivering cold. I would stand in front of the broiler at work just to get some heat. But ultimately nothing helped. Not even a hot shower. This would last 2-3 hours then it would switch to opposite of extreme heat. I was flushing, sweating and also lightheaded. Again about 2-3 hours this would last. After that was done my whole body would just ache. A dull and numb pain that was intense enough that I had to pop a couple of Tylenol 3 to get relief. This would vary between 12 and 36 hours. After that, back to normal. This happened about 6 or 7 times between fall 2010 and spring 2011. It became clockwork at how my body would react. I saw the doctor twice about these episodes, but as I wasn’t having them during my visits I was just sent on my way.

Then in spring of 2011 the ball started to roll. I was bleeding more now and was likely on my 6th “episode”. To recap, it has now been a year and a half since I first started rectally bleeding.

We had booked a trip to Phoenix with my family and inlaws. And before any holiday, I like to make sure I have that pantoloc medication for my ulcer. I don’t use it often, I just like to have some in case. So I called my doctor to get a new prescription but he wasn’t in. So in order to get it I had to see a substitute doctor to prescribe. As I sat in the waiting room for this quick visit I decided that the pantoloc would be an after request. I took the opportunity to tell this new doctor about my symptoms this past year and a half. The first think I noticed in seeing this doctor – she sat down and listened. She didn’t know if the two things (bleeding/episodes) were related but the fact I was bleeding for that amount of time needed some attention. She would book me to see a specialist. Great! Something! Finally! I knew it may be some time before I actually got in, but it was nice that there was progress. The next week we were in Phoenix. I was in the bathroom 7-8 times a day at this point, it was bad. While there we got a call from the GI clinic. They had an appointment for me the day we got back from Phoenix! So went to see him and he already knew about my story and my history. Turns out he is the husband of my substitute doctor. It was nice that someone had taken an interest in my situation. I was sent for a colonoscopy, some blood work and an ultrasound. I was in for the colonoscopy by the end of April and the blood and ultrasound came back normal.

During the colonoscopy they found and removed a large polyp up about 7cm up the shoot. It also happened to be right on a large vein so he had to cauterize and clip it. Not that I want the record, but it was the largest polyp he’d removed as well as the longest time on the table. This was also the first time CANCER was mentioned in any of doctor conversations. But he said if he though it was cancer, he probably wouldn’t have removed it. (I would have just gone right to a surgical resection)

But off the polyp went to pathology. I still wasn’t too concerned. People get polyps, they can bleed and it ran in the family. I was actually due for a routine colonoscopy at 40 because of my grandmother (usually for anyone without a history is at 50). That week after the removal was the best I had felt in a year and half. No more bleeding, more energy and no episodes. So I was on cloud nine. Then I got a call the following Monday for a follow-up. I expected a follow-up but they asked that I just come in today and without a specific time. Weird right? So about mid afternoon I headed up there and on that drive I actually started to think about cancer and that there is a possibility I could receive this news. It now became one of my longest drives ever.

Well, you know the result otherwise I likely wouldn’t have started this blog. As I sat in his office he outlined that it came back positive for cancer. huh? I really don’t remember a lot of what he said. But all of sudden I was booked in to see a surgeon, we caught it early, it may already been gone with the colonoscopy but we don’t know for sure, blah blah. What I did hear was “we caught it early”.

After I left the office, I got in my car, drove about 20ft and pulled over. I was in shock and I had to tell my family. I couldn’t hold in it till I got home.

I was in to see the colorectal surgeon at the end of May 2011 and scheduled for surgery June 29th. Now, I had done a lot of reading and research and things still looked pretty positive, but there were many unknowns. I had 1ft of my colon taken out and reattached and I was out of the hospital in 6 days. Unfortunately, I hadn’t done a lot of research on diet and colorectal surgery at this point and apparently neither did the hospital. The food they served me was the standard and when reading about what not to eat after colorectal surgery they were pretty much in complete violation of that diet. I was released Monday morning but back in 9 hours later with the most intense pain I’ve ever had. I had a bowel obstruction. They ask you to always rate your pain on a scale from 0-10. I can tell you now what a 10 feels like. It made the things you thought were a 6 or 7 into a 2.  I was admitted back to the hospital for another 2 days under morphine until the obstruction passed. Those two days were worse than the 6 prior days after surgery.

Once I was out of the hospital it took three weeks before we got the results from pathology. It was a LONG three weeks I can tell you. Like a gorilla sitting on my chest. Then we got the call. This was the best and only good news I would get again. The pathology stated all Lymphnodes negative and that I was T-zero N-zero. http://www.cancer.gov/cancertopics/factsheet/detection/staging . This the staging system. Mine meant T-zero – no evidence of primary tumour. N-zero – no evidence of lymphnode involvement. Adios Gorilla! The feeling we all had after that was unbelievable. Probably like winning the lottery, only better.

So, here is where I want my cancer story to end. Oh wait, sorry Dan, we’re not quite finished with you – said the fickle finger of fate. But we’ll give you a couple years before we do…

We moved on with a spring in our step and a new found direction in life. Things seemed to slow down, more stops in the rosebush and those little stressful things didn’t seem as important. As far as treatment, chemo was not offered because of the T0N0 result. I was still to get yearly colonoscopies but that was it. I admit I did research on my specific situation but all with respect to how western medicine could treat me. My diet changes came about more from preventing another bowel obstruction than eating an anti cancer diet. I switched family doctors which was necessary, but in going to a new one I think things were lost in the shuffle. My fault in that I didn’t take more control of my own self. It is true what they say – YOU ARE YOUR OWN BEST DOCTOR. You see, the one thing I missed in doing my own cancer research or that any doctor mentioned to me, was that 50% of colon cancer patients develop metastases! WTF! 50%???!!! And all I am sent home to do after surgery is quote “eat whatever I want” and have a yearly colonoscopy. If I knew now what I knew then, the metastatic phase “may” never have come about.

In the fall of 2011 about 3 months after my surgery, I was sent for genetic testing. Because of my grandmother’s colon cancer and my dad and sister having benign polyps, they wanted my blood to do some testing. It took a year and a half to map my DNA and apparently I had the “Cadillac of genetic testing” done. In February of 2013, I found out that my cancer was not genetic and that “I had as much chance of getting cancer as the next person”. Another victory for me personally, but more so for my daughter, niece and nephew.

My first follow up colonoscopy in spring 2012 showed two small polyps, both removed and benign. There was a little tension around that, but it was quick and we moved on.

The second year scope was in April 2013. Oddly, a couple of weeks before I was out at our annual Bowl for Kids with co-workers. Had some beers and then noticed the next day I had some discomfort in my right side. It wasn’t pain, just something noticeable. I decided to just cut out alcohol for while. I was only having maybe a glass of wine or a beer every day or so, but I just quit entirely. At the colonoscopy, the discomfort hadn’t gone away and I mentioned it to my specialist. Not even sure why I did, most people probably wouldn’t. That’s how insignificant it was. But he asked me if I had any CT scans or my CEA level in my blood checked recently. Huh? I was supposed to be doing this?? (CEA is a protein in the blood labeled as a tumour marker for colon cancer).

Well he booked me for a CT scan and some bloodwork. This colonoscopy came back clear as whistle. So I wasn’t really too worried about this bloodwork and scan. Well my CEA level came back elevated at 13.6. I think everyone’s average is between 2-4. But some people have elevated CEA with no cancer. But now there was some concern. The CT was finally done and on May 6th I found out my cancer had metastasized to my liver. It showed a lesion approximately 6 cm in section 7/8 of the liver. (Your liver is divided into 8 sections). Devastating news, but surgery looked to be an option. It was early, one lesion and in a good spot for resection.

Met with my oncologist and surgeon numerous times along with blood tests and appointments galore. It was determined that I would not go for neo-adjuvant chemotherapy before surgery. With certain tumors, they may do this before surgery to get the tumor more stable or shrink it so surgery becomes easier. I was to do surgery first and adjuvant chemotherapy afterwards. Had my surgery June 12th, 2013. I was in the hospital for 7 days and it was not as difficult as the colorectal surgery. Everything seemed to go really well. Only 20% of my liver was removed. I would spend the next 6 weeks healing and then looked to start the chemo at the end of July. I was dreading this more than the surgery.

Chemo was scheduled for July 22nd. I was to be given a colon cancer regiment called FOLFOX. It consists of 5-Fluorocil, Oxaliplatin and Leucovorin. It takes about 3-4 hours to infuse. This is primarily due to the Oxaliplatin. It is a platinum based drug that wreaks havoc on your veins, so they have to infuse it slowly. Well it started out okay. Felt normal the first 20 hours and then crazy pain in my jaw and chest. Turns out I am one of the rare cases that 5-Fluorocil causes cardiotoxicity in. I was having multiple vascular spasms that were about an 8.5 on the ten scale. Had two trips to the emergency because of it. Chemo was also stopped and it was determined that because I was NED (no evidence of disease) I would just be under surveillance. The risk of heart attack was greater than the cancer at this point. I was relieved in some cases that I didn’t have to do chemo. Not only that, adjuvant chemotherapy only shows a 5-7% immediate benefit with no benefit in overall 5 year survival. So it wasn’t like I was really missing out on something here.

So now we wait until the first 3 month scan. I was feeling better with each passing day and we were optimistic on the first 3 month scan. Well we couldn’t have been more wrong.

Its like my cancer was tired of “toying” with me on the past two surgeries. It finally gave me the FU and exploded. The CT and PET scan show 10 new masses in the liver and multiple lymphnodes involved. We knew the chances of metastatic cancer coming back were high, but didn’t think it would be this quickly and aggressively. These masses were also spread into each of the 8 liver sections making surgery no longer an option.

Faced with a dire prognosis and the fact that I couldn’t tolerate the FOLFOX regimen we looked for answers. I researched everything I could. However, it was determined that systemic chemotherapy was the best first line of defense. Fortunately, we found a drug called Raltitrexed that is combined with Oxaliplatin and used in place of the FOLFOX. I started this regiment November 7th. Infusion is every 3 weeks.

My chemotherapy is a week long horrible hangover. Nausea, Neuropathy, Fatigue are the most visible signs. Hair loss doesn’t look to be a common side effect. Keeping weight on is a challenge. By day 8 I start to “come out of it”. And then I get a 2 week vacation to rebuild myself before the next one.

I will do this regiment until January 8th, 2014. The following week I will get another ct scan where we will re-scan and re-evaluate. Some positive news would be great to hear.