When I was originally diagnosed with colon cancer, I was on the way to meet my wife and son at Bob Evans for a “kids eat free” meal. Unexpectedly, I received a call from the GI. He sounded distraught, so immediately I tried to put him at ease. (You read that right!) He was not used to delivering this kind of news to someone my age. He just kept apologizing to me. He had assured me that I was too young to have this disease at age 41, and with a 4-year-old son. When I got off the phone, I sat in the parking lot trying to determine what it would all mean, and how my family would react; all I could think of was my son growing up without a dad. Being a father to a now 7-year-old son and a 21-year-old daughter has had a tremendous impact on the way I treat my cancer and the decisions I make as I go along this journey. Thankfully, I am still alive and kicking.
From the moment I got the news, we scheduled surgery, went through the procedures for staging and started a chemo regimen with Folfox. We completed the chemo regimen in December and I was declared No Evidence of Disease (NED).
Less than a year later, I was diagnosed with recurring stage IV metastatic cancer. I was crushed that it had gotten to that point. My oncologist explained what this meant: based on the current treatment options, it was highly unlikely that I would be cured. But his goal was to extend my life as much as possible and hope that a cure would be found as I was treating. Knowing that I wanted to be a part of my son’s life as long as I could, I agreed to start a treatment regimen that included Folfiri and Avastin. I made it through the initial infusion and then wound up in the hospital.
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From that point on, my wife and I decided we would make all future decisions in the best interest of our family. Treatments resumed. As we continued to build upon the dosage, my body didn’t do well with the side effects. We tried several different meds to deal with the effects, but the more we tried, the worse my attitude became. We decided that I needed to try another approach because I was alienating the people who meant the most to me.
The change was just what I needed. My new oncologist is outstanding. Not only is she a skilled physician, but also a compassionate person. She really understands that quality of life is the most important decision and my overall health and attitude have been much better since the switch. Most importantly, I am able to participate much more frequently with my son and what’s going on in his life, which gives me so much joy.
I don’t think a cancer diagnosis is ever easy on a family. And for mine, it has been a huge stress. But, making decisions based on quality of life, and not quantity of life, has made decisions more cut and dry for us. Ultimately, I want to make sure I can still help coach my son’s soccer team, continue pursuing my Master’s Degree (my second one, mind you!) and keep up the date night tradition with my wife because, for me, these precious moments are what living is all about.
In February, the doctor suggested using a biologic, Erbitux. I had already been pleased with my reaction to a similar biologic, Avastin, so we decided it fit our tolerance. It was a great decision for us because it worked on the cancer cells (at least to some degree) but did not make me sick at all. In fact, it helped me to feel the best I had felt in some time, again increasing my ability to participate with the family.
Last week I learned that my current status is not good. A CT scan revealed that although some of my tumors have shrunk or disappeared, others have grown, and there is a new one in the lining of my small intestine. On May 30, I had my first colonoscopy in 18 months. The results were a crushing blow. The GI found a tumor at the original site of the cancer, and the biopsy has proven it to be cancerous. We have decided that we will combine two of the meds that we have previously used and hope for the best.
Although this disease has torn me and my family down at times, I’ve made sure to get involved and leave a footprint in the lives of other patients so that our fight hasn’t been in vain. At the Colon Cancer Alliance National Conference last fall, I met several of the people face-to-face who I had been chatting with online for many months and also made new connections and friendships that have continued to flourish to this day. At the conference, I kept hearing the message to get out and spread our message and our story and help educate the people in our lives. I took that message very personally and have acted accordingly. I regularly post status updates on Facebook, both the victories and the defeats, the joys of my life and the challenges I face. My friends have benefited a great deal; they say they feel personally involved as they are able to pray for us and get personally motivated to take better care of their bodies and to overcome challenges in their own lives. I have also made it a personal mission to become more involved with the Colon Cancer Alliance. I have increased my involvement as a volunteer Buddy, have taken on a more active role in the My CCA Support Online Community and am very active on social media helping newer warriors with their personal battles by sharing my experiences.
My family and I are taking a trip home to Rhode Island around Father’s Day and we’ve decided to hold off on adding one of the meds until we return so that we can enjoy our visit. Once again, the quality of my life and that of my family dictates our decisions about treatment and has allowed me many special moments with them over the last three years. Because after all, what is important? For me, at the end of it all, I want to be able to look back and see how I was able to spend quality time with the most important people in my life – my wife and children.
- Richard Mason, 44, colon cancer warrior