Meet the 2016 Courage Ride Patient Honoree: "Patient 001"
I’m a typical small town guy. I’ve lived in the same small town my entire life. My mom and dad live just down the street; my brother, sisters, nieces and nephew are pretty much all within shouting distance. I have life-long friends that I went to school and played sports with right in my own backyard. I coach summer baseball and stay involved in the community. I have a fantastic wife of 13 years, an 11-year-old son and a 7-year-old daughter who are my everything. I have had great times, great health and a great job, but I have also had cancer.
My story began early in 2015. After slipping on a patch of ice, I noticed a large lump in my left thigh. At 34 years old, still with a young man’s false sense of immortality, I didn’t think much of it, passing it off as a pulled hamstring. As weeks turned into months, my condition slowly became more of an issue. After stern encouragement from my wife, I reluctantly went to our local clinic in June to get a doctor’s opinion. He agreed that something was wrong and thought it could be a possible hamstring tear or hematoma. The following morning I met with an orthopedic surgeon in Cedar Falls, again, focusing on a hamstring injury. I had an MRI that Friday, dreading the thought of a few additional appointments for such a silly injury.
Monday morning came, June 29 — a day I will never forget. The doctor’s office called a few days in advance of my follow-up appointment, wanting me to come over right away to discuss the results of the scan. I made a b-line from my route to work and stopped in — none the wiser, never expecting the news I was about to hear. The doctor asked me to have a seat, and the words that followed cut like a knife — “you have cancer”. Three words that completely change a person’s life and perspective.
At first it didn’t seem real, and though my wife and I stayed as optimistic as possible, fear set in — fear of the unknown. The next few days proved to be the longest of my life. With my wife as my confidant, we decided to keep the news quiet until we had a better picture of exactly what we would be facing, but it became increasingly difficult to hide the reality and not reach out for support. I became constantly concerned with the tumor and desperately wanted it out of me. Everyday aches and pains turned into unwarranted concerns and phobias. Was it just in my leg or had it spread to other parts of me? How serious was it? Was it hereditary? Where would the road ahead take us?
On July 1, I was officially diagnosed with sarcoma and we met with my oncologist — one of only 40 sarcoma specialists in the country — Dr. Mohammed Milhem, or as we came to know him, Mo. It was another milestone day for us. It was the day that a light shined through the darkness and everything turned for the better. We were told about a clinical trial, a possible alternative to chemotherapy. The basis of the trial was to inject a herpes virus into the tumor, triggering white blood cells to attack the mass, something that had never been done with sarcoma before. I remember thinking to myself, “I just found out that I have cancer and now you want to give me what?” I almost expected Ashton Kutcher to jump out and tell me I’d been punked, but Mo clearly explained the science behind the trial, as well as his belief in the possible benefits and also the risks involved. After a few days of deliberation and soul-searching, we decided to put our belief in Mo’s trial. While nothing was definite and risks were involved, the hope of a breakthrough treatment that would spark my own white blood cells to naturally fight the tumor while continuing to fight any returning cancer was a tremendous option. That, coupled with the opportunity to be a part of a revolutionary cancer treatment that could benefit others as well was more than I could pass up, and I became “Patient 001”.
Armed with the knowledge we had received and our newfound hope, I started to explain my condition to friends and family. With each person I told, a weight seemed to lift from me and my support team rapidly grew. I felt stronger than ever and ready to fight.
I began five weeks of daily radiation along with 13 weekly injections of the clinical trial virus in July. I won’t sugar coat it — the first injection was hell. At one point, after days of terrible nerve pain, my wife had to take me to the emergency room in the middle of the night, but as he promised, Mo tailored the medications and we had pretty smooth sailing from there. Each treatment became easier than the last. At times I even began to feel guilty that I felt as good as I did, especially when sitting next to someone in the cancer center that had it worse than I did. I received great support and advice all along the way from the doctors, nurses, family, friends and coworkers — including the fact that the cancer wasn’t caused by anything I did or didn’t do. The kids and I even made a paper chain with links for each radiation treatment and injection. It seemed eternally long, but we were prepared for the journey, and little-by-little the chain became ever more manageable until it was finally gone. Along the way something changed — the tumor began to shrink, something Mo had never seen with a sarcoma tumor that had been treated with radiation only. Once again, I was reminded that it could be worse, and it’s going to get better.
October 13th finally came; the day I had been waiting for. It was the day of my surgery and the day the tumor (and hopefully the cancer) would finally be out of me. After 4 hours of surgery and 4 more days in the hospital, it was time to go home as a cancer survivor. Thank you, Dr. Miller. We were told that you were the best and they were right. I was up on my crutches, walking the halls the next morning.
Dr. Mo and I have developed a solid relationship over the last several months and I am proud to know such an individual. Each time we meet, we talk about hope and more importantly the belief that led me to take part in his trial. For me, my family and friends, believing turned into hope and that hope turned into reality.
Before I started Mo’s trial, I couldn’t think straight; I would lay awake all hours of the night. I kept dwelling on what would happen to my family if I were down-and-out, or worse, out of the picture — that’s no longer the case. I’m very happy to say, I’m doing great. I have finished physical therapy and day-by-day I’m taking my life back. While I may not be totally out of the woods just yet, I’m no longer scared. I’m cancer-free, with a new lease on life and restored faith and vigor for tomorrow.
Trent passed away on April 27, 2018 from sarcoma.