This can’t happen now!
That was my initial thought. My wife and I were 5 weeks from having our first child; I was traveling 5 days a week as a district manager for Toyota and then running the small business that we owned on the weekends. I was working over 80 hours a week and could not even stop to catch my breath. How could this be happening to me?
It all started in May of 2009. I started having headaches that I would compare to migraines; I would be in bed in so much pain and even vomit from them. I was referred to a pain specialist and he diagnosed me with a bulged disk in my neck. I was given epidurals in my neck every 3 weeks to get the swelling to go down. The headaches never went away. I went to neurologists and they were convinced of the same thing. They started me on physical therapy twice a week for 4 weeks. Needless to say, 4 weeks later there was still no change. Now I was not only getting headaches, but also becoming very tired. I started sleeping more than ever and even forced to pull over while traveling for work to take naps on the side of the road. I started losing color in my hands and face by August and was always exhausted. I attributed it to working too much and stress with a baby on the way.
I was in my office on Monday August 10th 2009. I had several coworkers comment on how pale I looked. I finally became so frustrated and explained that the doctors could not figure out what was wrong with me. A friend in the office convinced me to go back to my general doctor to have them do a full blood test. I set an appointment for Thursday the 14th. Friday night was my 10-year high school reunion that I helped organize, so I was hoping I would be feeling better for that. I got the call on Friday morning from the nurse that told me to go to the closest emergency room ASAP. I was at my wife’s doctor’s appointment so I told the nurse it would be a couple hours before I could get to the ER. The nurse demanded that I go immediately. She said she was not even sure how I was walking because my hemoglobin was below 4. I had no idea what that meant, but I could tell that it was not good. I walked over to the ER. They rushed me up to a room and started me on blood transfusions. They scoped my stomach assuming that I had bleeding ulcers. I told them I never saw any blood when I was throwing up and that it could not be ulcers. They told me that I owned my own business and worked in the auto industry and was having a child during a recession… it had to be ulcers. No ulcers. After 7 blood transfusions, the next day I prepped for a colonoscopy. It did not take long to find the tumor.
Initial CT scans showed that my liver was not involved but lymph nodes seemed to be inflamed. I was prepped for surgery a few days later to have the tumor removed. I planned on having it done laparoscopic. I went down for surgery at 9 am. They told me that surgery would start at 10am and I would be back in my room for lunch by 11. I woke up in my room around 3 pm. I figured something had gone wrong by the reaction on the face of my wife and mom. The doctor came in and told me the tumor was quite larger than they anticipated and it had gone through the colon into the abdomen and close to the kidney. They were unable to remove the whole tumor even after removing 25 inches of my colon.
My oncologist informed me that 3 of the 58 lymph nodes were involved. He planned to put me on 5 ½ weeks of radiation and chemo treatments to remove the last of the tumor then 6 months of chemo. My big challenge at this point was to go home and get stronger so I could start the treatments. I did have a port installed in my chest so I could have all chemo and fluids done through that.
The first day of my radiation and chemo was the night that we checked my wife into the hospital for the birth of my son. (9/17/2009). I slept in the room with her that night and the next morning the doctors induced labor. I walked over to receive my radiation treatment and walked back to be there for the birth of my son. Cole Thomas Benlon was born around 8pm on 9/18/2009. He was 5 lbs 12 oz and 19 inches long. Nothing was like watching life happen as a fanny pack pumped chemo into my port at the same time.
Radiation took its toll on me and having to wear the fanny pack with the chemo pump was no fun trying to sleep or shower with it. I was exhausted every morning after radiation and was having horrible diarrhea. I was having a BM about every 15 min. I later found out that it was an infection in my colon called C-Diff. Yeah loved it…. I actually got it 2 times in a row. It was miserable. That was mentally the most challenging 2 weeks of radiation. I was starting to get very tired and worn down and still had the joys of BM’s every 15 minutes and the joys that came along with that. That was such a challenging time. My wife had to take care of Cole full time as I was not able to do much of anything. I really started to wonder how bad chemo was going to be!
After the radiation, I was given a few weeks to build my strength back up. My first chemo treatment was sort of a surreal day. I sat in the room with people twice my age and watched the TV all day thinking that it could not get any worse than this. I was so grateful to have so many people bring me lunch and sit for a few hours every time to make it go by a little quicker. The combo of chemo drugs given to me had interesting side effects. The one that was the worst was the numbness and sensitivity to cold weather. It was just my luck that I had the pleasure to go through it in one of the worst winters in Kansas City ever! As treatment went on I could feel my feet and hands become numb as the day went on. I lived on soups and warm teas to keep food in me. I hated not being able to eat anything cold. We owned a frozen custard store and I could not even enjoy it.
Chemo seemed to go fast, I took most of the time off work to stay focused on the task at hand and work was great! They were very supportive and allowed me the time I needed to face this challenge. I tell people it was a blessing in disguise in a sense that if I had to go through this at least I could be home with my new son for the first six months of his life (even though I was little help). I was forced to skip 2 treatments for a week each time due to low white blood cells. Other than those 2 weeks I did pretty well. I was surprised how fast the weeks seemed to go by. I tell everybody that chemo is not anything but mind over matter. If you keep a positive attitude and stay focused on your goals and make them manageable anything can be done. I broke each treatment as its own goal. It was only 12 treatments, right, anything can be done 12 times!
I finished treatments one week after my 5 year wedding anniversary. It was April 29th and I have never been happier. The last time I had my chemo pump removed I had tears in my eyes. It was a great accomplishment in my life. It’s been 8 months since my last treatment and I still struggle with the nerves in my feet, sometimes they are numb other times they just hurt. I have started to focus on getting myself healthy again. I now try to eat all organic and a lean protein diet. I work out 6 days a week and love the feeling of sweating at the gym.
I believe that doctors should reconsider the recommendations for colonoscopies. The amount of people getting diagnosed with colon and rectal cancer under the age of 40 is staggering and a growing trend. A diagnosis in people under 50 has risen by 40 percent since the 1980s. The number of rectal cancers diagnosed in people under 50 has increased 63 percent since that time, according to studies funded by the National Cancer Institute. The best way to save people lives is early detection and I will be an advocate for that.
Here is the quote that was given to me and I read it often during treatment:
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” ~Mother Teresa