The week of July 4th, 2015 at my Hardee’s restaurant in Smyrna, Tennessee was a busy one as most holidays were. The workdays were long and hard. On Monday, July 6 the truck delivery was a big one, and by the time I was finished with counting inventory and doing weekly paperwork my back was so sore I was ready to drive home for some needed rest. I was hurting so bad that I had to sit in my car for thirty minutes before I could begin the 45-minute drive home.
That had been a daily ritual. A persistent pain in my side and back had been making it harder and harder to do the things that were once routine. The pain in my back was getting so bad that I dreaded even driving, and even trying to lie in bed and rest was dreadful. Thinking that perhaps I had a pulled muscle, I decided to go to the Manchester Urgent Care on July 7th and have it checked out.
I hate going to doctors. Never had time. Hate waiting. Hate forms, paperwork and questionnaires. After filling out forms, paperwork and family medical history, blood was drawn, I peed in a cup, my vitals were checked, and the on-duty doctor asked questions as she prodded my back and side. Pretty much a waste of time as I expected. I was almost 60 years old and just assumed the pain was a function of an aging body. The doctor told me that some things showed up in my blood and urine that were concerning enough to warrant a CT scan, which was scheduled for the next morning at the local hospital. She mentioned something about proteins and other things I didn’t pay much attention to.
The next morning, I had the scan as scheduled. About six hours later I got a call from the clinic requesting that I come in right away to see the doctor. The words “right away" bothered me, and as I sat in the room wondering what “right away" could imply the doctor came in and told me. “The scan shows a growth on your pancreas and several on your liver. It looks like you have pancreatic cancer, and it has spread to your liver.” She teared up a bit as she was giving me the dreaded news. While I was stunned, I wasn’t surprised. Cancer runs in my family. By the time I had turned 22 I had lost my mother, father and grandfather to cancer. I had always assumed that I would eventually travel that path. The doctor told me she would refer me to Tennessee Oncology in Murfreesboro.
I left the clinic and sat for a few minutes in my car and called my wife, Teresa. More calls were made, family, work…the journey was just beginning. As I sat in the parking lot I typed in the words “pancreatic cancer" on my smartphone. I needed to know what to expect. I quickly learned that 95 percent of those diagnosed die within five years. I learned that there are no screenings for it and that many who are diagnosed may have had it for years before the diagnosis. I learned what the term “stage 4” means. I needed to know what was in store for me. I wasn’t encouraged by what I was reading, but I wasn’t ready to give up. The fight was beginning.
The first few days, weeks and months were a blur of calls, appointments, scans, consultations and referrals. Forms, paperwork, questionnaires, waiting rooms…. oh, how I hate those. Add to those the cloud of doom that pancreatic cancer brings. I would look around the waiting room at the other patients who were at various stages of their own journey. I saw some whose body had been ravaged by the aggressive type of the disease. I would see some one week and then would not see them again. I wondered what happened to them.
Early in my personal journey a doctor said, “Your tumor is a ticking time bomb, but we don’t know how long the fuse is nor how long it has been lit.” Not the most encouraging words, but he was a young doctor.
I started chemo within three weeks of diagnosis. Sandostatin shots every 28 days. The cost of each shot is around $9,000. Luckily, I had insurance. Radiation treatments would cost over $100,000 each round. The mailbox quickly filled up with bills. Bloodwork, CT Scans, MRI Scans, PET Scans. Luckily, I had insurance, but how long could I work and keep it? COBRA isn’t cheap, nor is gas, and the trips to Murfreesboro and Nashville were piling up. We blew up a tire on the way to Nashville on our first trip to Vanderbilt. The cause was a pair of nail clippers someone had thrown out their window on the interstate. The cost…$180. When it rains, it pours. Insurance deductibles were met early, but there were co-pays, pain medications, gas and meals. I developed type 2 diabetes, and the cost of insulin, even with insurance is frightening. The time came where I could no longer work full time and I was placed on disability. Unfortunately, I would have to wait for 18 months on SSI Disability before I could qualify for Medicaid. I would have to pay COBRA prices to continue my insurance coverage. The cost--$1200 per month, just for me.
No other choice, the cost of surviving isn’t cheap.
I consider myself lucky. I attend a church that has been very supportive to me and my family. Some don’t have that. I was able to make it through the 18 month wait period to qualify for Medicaid and my insurance cost was cut in half. At age 65, my cost for insurance dropped again. Some aren’t quite so lucky.
Early in my journey, I was placed in contact with the Nikki Mitchel Foundation. I learned about Nikki's story and was quite moved, not only by her passion for life, but also her compassion and foresight in setting up this foundation for others suffering from pancreatic cancer. I was also moved by the love and compassion of Rhonda Miles and other friends of Nikki in carrying out her dying wishes. The first $50 gift cards happened to come at an opportune time, as our finances had dwindled to the point that the gas card was needed immediately to get me to my chemo treatment in Murfreesboro. Each month, the cards come with a personal note of encouragement. The $50 Walmart card pays for my pain meds. Through the kind people at NMF I was able to meet Carol Noon who lost her husband to this disease and Nicole Pankey, whose tumor was more aggressive than mine and whose journey was cut short.
Most importantly I have been inspired by the kindness of all of those who have contributed to and work with NMF to give us hope and the inspiration to continue our journey.
I don’t consider myself a survivor. The tumor on my pancreas is inoperable. My doctor says I will have to continue chemo treatments for the rest of my life, every 28 days. Instead, I am surviving. I am able to enjoy my life with my wife Teresa, my son Caleb and my daughter Amanda, and our lives are made so much better by the kindness of people like you at NMF and the donors, most of whom have never met us, but do know someone near to them who does suffer from this disease.
My fuse will one day reach its end; but love burns eternal. I thank you from the bottom of my heart.
Richard Burton