Hometown: St. John’s (originally from Carbonear)
What school did you attend? Carbonear Integrated Collegiate
Do you work? Yes, Johnson Inc.
What is your career goal(s)? I am currently meeting my career goals to be a IT Risk / Information Security professional
How did you find out you were sick? What event(s) led to the diagnosis?
For 20+ years I have had Crohn’s Disease. One evening late June 2008 I was somewhat constipated. I lied down to rest and was massaging my adonomial area and felt a small lump of sorts in my bowel area. It was small, perhaps grape size. I thought it was stool. Later I went to the bathroom and never thought anything of it.
The last week of July 2008 I was in London, UK for a conference with work. While I was there, a collegue from the UK asked me if we get any sun in Newfoundland because I was so pale. I thought it was somewhat odd but never thought anything of it but a joke. I was feeling fine otherwise and had normal amounts of energy. I left to go home July 31st and was still feeling well. I arrived home late that night. The next morning, Friday August 1st, I woke up feeling really exhausted and fatigued. I thought it was jet lag. I napped mid-day because I was so tired. This lasted all weekend. I saw my parents that weekend and they thought I was having a Crohn’s flareup because I looked sick and pale. By Monday there was little change so I saw my physisan. He thought it was Crohn’s and gave me Prednisone. It didn’t help and the month of August and into September I was not getting better. I was still very tired and exhausted, and losing weight. The lump had also gotten larger as I noticed it again mid-August. I finally saw my GI September 9th and by this time that mass had gotten much larger. I had a CT scan on September 11th and the following day, September 12th, I was told I had tumour, likely Lymphoma. A blood test revealed my RBC was extremely low to the point medical staff said it was amazing I was able to get into the hospital on my own for my pre-admission for surgery. I had to have a blood transfusion and one again during surgery.
What year was it? What was your age at the time? This was late summer, 2008. I was 33.
At what level of education were you at diagnosis? University degree (B.Comm Co-op) with CISA and CISM certifications
What was your diagnosis?
The lab results came back as Small Bowel Cancer, large predominantly undifferentiated carcinoma with areas consistent with poorly differentiated adenocarcinoma. It was 25cm long by 10cm wide at the widest point. It was that big one could say I gave birth to it! I also had 12 involved lymph nodes, some up to 5cm in diameter.
What were your first thoughts when diagnosed?
My first thought was, I am in serious trouble and how am I going to get through this. My second thought was the reality I could die, and making my wife of 3 years marriage a widow at 29. What will happen when I am gone??
My second thought was to grab the bull by the horns and get this surgery scheduled and get that beast of a tumor out of me.
I also didn’tt sit idly by waiting for phone calls about when my surgery would be or who would perform the surgery, etc. I was proactive and did what was necessary to speed the process along. Being a resourceful person can pay off.
How did your family react?
They were shocked and scared but supportive. Having my parents living 110kms away didn’t help when it came to relaying information. Emails and phone calls may not always get the message across of updates, then my parents would wonder what did he mean by that?!? if they started recalling emails/phone conservations etc.
How did your friends react? Were you treated any different?
My friends were shocked too. They were very caring and supportive as well. You definitely get a reaction when you tell people you have cancer.
What did your treatment consist of?
I had surgery to remove the tumour on Oct 1st and 12 affected lymph nodes. 4ft of bowel was removed, 2ft for the tumor and 2ft of bad bowel due to Crohn’s. I was in hospital for 12 days. I then had 2 months to recover from surgery where I ate more than I ever had before and gained almost 30lbs in that time. An average of almost 3000 calories a day would do that! Because they removed the worst of my bowel from Crohn’s, I felt 10x better than I had in years.
On Dec 10th, I started chemo and that ended on May 8th after 11 treatments. The plan was for 12. I would go into the Cancer Centre every 2 weeks for 3 hours for one part of a treatment, and then would take home an infuser that was attached to my side for the second part of treatment. I was on the home infuser program. I had this attached to me for 46 hours. It was a nuisance especially when trying to sleep with a pouch strapped to your waist.
The chemo would enter into my body via a port under the skin on my chest, a Power Port to be exact. I still have the port in me for now. I get it flushed every 4 weeks to ensure it doesn’t clog.
In addition, after treatment #10, I was given Neulasta to boost my immune system. My white blood cell count was well below normal. Normal is between 4.5 and 10 if I recall. Mine was down around 2. After the shot, it went to 16. I felt fine after the first shot. Then they gave me a second shot after treatment #11. I had a bad reaction from that shot, much like chemo treatments. I found out later my WBC hit 38 and when it’s that high, the body has a bad reaction to it. Then my doctor recommended calling it quits after #11. The objective, he said, is to kill the cancer without killing you . I was in hard shape after #11 and he figured I had enough. I lost all the weight I had gained last fall and had no energy at all.
After surgery, I felt great. I was able to eat more than I ever could from having that extra bad bowel removed due to Crohn’s. Many days I could eat over 3000 calories and I gained all that weight. I thought this ordeal of cancer may be a blessing in disguise if it means my bowels will function better in the long run.
Chemo was brutal. I had possibly every known side effect. I lost much weight, felt sick, tired, cold, fatigued. It was stressful to deal with. I could barely move at times. My oncologist said it is amazing I was able to get though the chemo I was given. On April 1st I felt so sick I had to go into the ER to get fluids and potassium pumped into me. I also became so cold that 11 blankets could barely keep me warm. After a night in the hospital, I felt much better.
I did find it hard having to rely on others to clear my driveway of snow, fix a flat on my truck, drive me here and there if I could not myself, etc. But I sucked it up as there was nothing I could do about it but express my appreciation.
In which Hospital(s) were you treated? Health Sciences Centre, Bliss Murphy Centre
What is your current medical status?
My last CT scan of Sept 2009 revealed no signs of reoccuring cancer. I am doing much better (Dec 2009). I have good amounts of energy, I am full time back at work since Oct 28th, and have been flat out doing things. I am currently having a Crohn’s flareup but soon hope to get it under control but it hasn’t slowed me down much. I received another good CT scan result on January 10th….no evidence of disease!
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Chemo had a really bad impact on my bowels. I am still not as well as I was after surgery but many times better than I was during chemo. I have most of my weight gained back and eating well. Emotionally I feel stronger and feel like a survivor. Like my mother says, what doesn’t kill you can only make you stronger! Back in late October I felt well enough do get back into a normal routine, do work around the house and shed, but would get somewhat tired after a couple of hours. But now it’s December and I feel pretty much back to normal now minus getting my stamina back again. My body isn’t use to manual labour as after a weekend of painting and other work this past weekend for example, my muscles are aching!
What was the toughest part of your challenge?
The chemotherapy. That was a rough 6 months. I would do the surgery again and again if it meant no chemo. Surgery was a breeze. The worst part of surgery was the tube in your nose to your stomach to suck out bile. That was very discomforting. The actual surgical site was easy to cope with.
What was the best part about having your challenge?
Luckily, if you can say that, 20 years of Crohn’s disease helped me prepare for this type of challenge. I was in fact off for a year and although most of it was unpleasant, I did enjoy some of the time off to do things I wouldn’t normally get to do.
What really motivated you to keep going while you were/are sick?
I took things one day at a time. My wife kept me on track as well. She was great through the whole thing. I also love to snowmobile and the thought of a new sled for 2010 also helped me push myself! haha. Also, if I had a distraction or a small project on the computer or something to do, it helped get my mind off it. For example, I made a 30min snowmobile video with music of my riding buddies and myself. It took a few weeks to do but it was fun and kept me away from the TV, and kept me challenged on figuring out how to do it.
What lessons or messages have you taken away from your experience?
One day you can feel fine, the next day you may not. Therefore, live life to the fullest. I tried to live by that rule prior cancer as I knew by having Crohn’s that someday it could give me trouble.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
It is very surreal. I can’t believe I had cancer. There is also a dark cloud over my head that it may return. I won’t be declared disease-free for another 4 years. It is also hard to believe it happened to me, but I never once said why me??? What’s the point? Many people get cancer. My chances of getting cancer were not low by any means. 2-3 years prior all this I had conservation with my GI about my chances of getting bowel cancer. So it was already on my mind somewhat. Now that I am back to life as normal, it is hard to believe I was off for a year. I also bought a new snowmobile for 2010 so I am pumped for the winter! I actually took it for a field recently to try it out. It was my first run on a sled since being sick so it was like a milestone in my recovery.
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
Doctors think a drug I was on called Imuran used to suppress the immune system may have had a hand in my cancer but the risk of that drug causing or contributing to cancer is extremely low. I was taking it to control my Crohn’s. But having Crohn’s for 20 years puts you at a higher risk of cancer anyway, although the risk is still low. If you have had Crohn’s for 20+ years, I recommend getting advice from your specialist with regards to things to watch for in order to catch anything early.
Did you attend any support groups during your challenge?
No, I barely felt like getting out of the house. I did seek support online however.
Did you find it helped?
Yes, somewhat. Small bowel cancer is rare and hard to find people who had it. But other bowel cancer sites did provide some good info and stories that helped regarding treatment.
If you did not attend a support group, why?
I can’t say why I did not really. The whole treatment was just too much to deal with at times and having company or being around people wasn’t appealing. And when I did feel better on occasion, I wanted to get my mind off everything and do something distracting.
How are you connected with Young Adult Cancer Canada?
I think a group like that is a good resource and supportive. I know Geoff personally as we went to MUN together so I use to get his emails during his challenge prior his work with his current organization.