I began to have health issues the summer of 2016. I went to the doctor and he decided to do a colonoscopy. I knew something was wrong, but the doctor said he couldn’t find anything. On my way I went thinking this was all in my head.
Over the next six months I would visit the emergency room three times with severe abdominal pain only to be told that there was nothing showing on the scans (it is not uncommon for doctors to believe Appendix Cancer is Crohn’s Disease). After the last visit to the emergency room, the doctor referred me to University of Colorado Health in Denver. In May 2017, I was scheduled to see a Crohn’s specialist and he scheduled me for another colonoscopy. The results of the colonoscopy indicated I had cancer, the origin to be determined.
I was referred to Dr. Steven Ahrendt at UC Health. A very skilled surgeon. It was a whirlwind of a time as I was having all different kinds of test and procedures. On July 5, 2017, Dr. Ahrendt performed laparoscopic surgery to find out the extent of the disease. After the surgery he said I had extensive disease and would require chemotherapy in an attempt to reduce the amount of disease in my abdomen. I was diagnosed with stage IV signet ring cell adenocarcinoma of the appendix.
I began chemotherapy immediately with Dr. Lynn Mathews from UC Health who was consulting with Dr. Christopher Lieu, also from UC Health. Both magnificent oncologists. I remember meeting with Dr. Mathews for the first time and her opinion was to be as aggressive as possible. We started with folfirinox; a treatment commonly used for advanced pancreatic cancer patients. A regimen that wore me down and sucked the life out of me, or so I thought. I continued on folfirinox until October 2017. I had a scan the end of September which showed a reduction in the amount of disease. Now I could prepare for Cytoreduction/HIPEC surgery. We scheduled the surgery for October 30, 2017.
On October 30th I had Cytoreductive/HIPEC surgery. I was in surgery for 14 hours. I finally saw my wife that night at 10:00 pm, although I remember none of it. I spent 12 days in the hospital and was finally released to go home with a temporary ileostomy. On January 2, 2019, I had another surgery to reverse the temporary ileostomy. I began chemotherapy the end of January and continued to May 2018. A scan in May 2018, thankfully, indicated I was NED.
The entire experience was so humbling. At a time when I thought I was on top my game, I suddenly became physically weak, relying on family and friends who have supported me and assisted me with so many little things in life. My wife, Debbie, was at my side the entire time giving me hope and encouragement. My wife is also a survivor. Probably more so than myself, as she watched at times knowing that the only thing she could do was give me words of encouragement. Words that were well accepted and rejected. It was the perseverance and the hope that my wife, sons, Tyler and Mitchell, family and friends instilled in me that kept me going.
So where am I now? I continue to complete my scans which are currently NED. I still have lingering side effects from the chemotherapy and surgery, but I ignore them and try to live my life to the fullest. I eat a balanced diet and exercise five to six days of the week. Exercising is when I do not feel like a cancer patient. When I exercise the pain subsides, the neuropathy no longer exists, I am free from my own thoughts about this disease and mortality, and the adhesions in my abdomen become a figment of my imagination. I am truly free of cancer when exercising.
I have always been intrigued by physical challenges. Physical challenges that test man’s resolve. One’s that beat a person at their own game. Was I going to be beat at the game of Life? No, is the simple answer, but it came at a price. Two years of pain, adhesions, neuropathy, hand/foot syndrome and the lists go on. In August 2019, I rode in the ‘King of the Rockies’ mountain bike race in Winter Park, Colorado. I rode with my sister, son and two nephews. Something I wasn’t sure I was ever going to be able to do again in comparison to even surviving this nasty disease. I finished the race in third place in the men’s novice, age group 19+. Granted there were only 5 of us in that category, but I finished.
The one thing that I found with the entire process was to embrace hope and develop a support system. Hope to be free from this dastardly disease one day. Hope to do the things you used to do. Hope to see the sun rise and set the next day. I couldn’t imagine going through this disease without hope. It’s a feeling that can get lost in the pain and multiple appointments, but, if allowed, maintain its grip and control over your mind and body. Hope can help provide positive outcomes over a disease that is unforgiving and relentless.
Whether you are just starting your journey or are continuing your journey with this disease, nobody knows the outcome of your journey except the higher powers that be. One thing I do know is that with the time I have left on earth I am going try to live rather than simply exist. We are all connected in some way by a rare disease that makes us unique to the rest of the world. Know that with each day the light at the end of the tunnel will get brighter regardless of your path. Find what you love and work it to the end. Godspeed to all.
Bob and his family have also organized a mountain bike team to raise awareness for appendix cancer and raise funds for the ACPMP Research Foundation. Team AC/PMP will be racing in the 25 Hours in Frog Hollow near St. George, Utah on November 2-3, 2019. You can follow the team’s journey by following Team AC/PMP on Facebook or their website. If you’d like, you can make a 100% tax-deductible donation to support Team AC/PMP today.