Gene Schumaker

<< All Pharyngeal Cancer Survivors

In December of 1999, Gene began to show signs of what we thought were just allergies. His nose was running or stuffy, eustation tubes were always clogged, and eyes were teary. We did not have good insurance at the time, so Gene felt confident that he was fine and that his symptoms would not last long.

By January of 2000, Gene was having a yearly physical and was not able to hear clearly out of his left ear. Our primary care physician at the time referred us to an ear, nose and throat doctor. He told us in February that Gene had a nasal infection and that he had an 80% hearing loss in his left ear. A tube was put in his left ear for drainage. Later we found out that the doctor had written in his notes that if Gene’s hearing loss continued he would order a CT scan. The hearing loss did not continue and Gene was given antibiotics along with Nasonex for his sinuses.

In July, we began to notice nosebleeds, not serious at first. However, on our way to church, he sneezed and blood went everywhere. He held his nose, but the bleeding would not stop. An hour later we made it to an emergency room where the bleeding began to stop. After four hours, the emergency doctor sent us home. He told us to see our primary care physician who would prescribe Claritin.

By this time, our insurance had changed for the better with a new primary care physician whom we had not yet met. We made an appointment and the doctor prescribed Claritin and sent us home that Tuesday afternoon. On Saturday of the week, we were driving home from a barbecue at our friends’, the associate pastors of our church. Gene began to have double vision and had to pull over to the side of the road. His right eye was completely dilated. We called the doctor immediately and were told to stop taking the Claritin and to see her on Tuesday. She examined Gene and ordered a CT scan. A CT scan? Our hearts pounded. The scan was set for Friday, July 14th. The night before, we went into prayer asking God for direction. We had no idea what we were facing. God gave us a peace knowing that Gene would live and not die. We set it in our hearts, steadfast.

Gene began to have numbness on the left side of his face when he went in for the CT scan. The next day, we received a phone call telling us a mass had been found within the nasopharynx and that Gene needed to go to the emergency room for blood work and an MRI. We waited all day for a neurosurgeon to go over the MRI results. One of our church pastors was there when we heard that the mass was too close to the major nerves and the brainstem to be removed. Removing the mass surgically would totally debilitate him. Our hearts sank. Our lives began to pass before us. We had only been married for four years and we were trying to have a family. We were referred back to Gene’s original doctor who performed a biopsy on July 24th.

On July 26th, the pathology report came back and the mass was malignant. We cried and then prayed for the right doctors and the right team. Gene would need to undergo radiation and chemotherapy. Later that day, we saw a radiation oncologist. He told us that Gene only had a 30% chance to live, he had a T4 cancer and the cancer had not passed to the lymph nodes in his neck. The doctor was rude, not even stopping to take a breath as we cried. The nurse who accompanied him offered tissues.

"Nasopharyngeal Carcinoma" – say that 10 times. Since the oncologist had never treated a 28-year-old with this type of cancer, he wanted to write a paper on Gene. Gene has never smoked and had never had any significant symptoms, until recently, but we heard only the worst, delivered with no compassion. We asked him if he would work with our naturopathic doctor. He tried to talk us out of it, telling us that kind of doctor was a quack selling snake oil. We asked him if he believed in the power of prayer. He looked at us, looked at the MRI, and told us with sarcasm that at this stage it could not hurt. Later that week, we saw a hematologist who was compassionate but believed that only standard medical treatments were best. We knew then that we wanted a second opinion. The pastor of our church, who graduated from Rhema Bible Training Center in Broken Arrow, reminded us that there was a cancer center of some kind in Tulsa. He suggested that we look into it as well as attend healing school on the campus of Rhema.

Since we are computer consultants, one of the first places we looked was on the Internet. We found the Cancer Treatment Centers of America web site and called the phone number. Five days later we received a phone call from Sharon at Cancer Treatment Centers of America (CTCA) at Southwestern Regional Medical Center (Southwestern) in Tulsa, Oklahoma. She took our insurance information and said she would call us back with more information. That afternoon she called back and asked when we would like to come. Our plane flight would be provided and transportation would be able to take us where we needed to go. The meal and guest room rates were very reasonable and the treatments were covered by our insurance. What a blessing!

We flew to Tulsa the following Wednesday (August 9th) for a second opinion. Gene had his wisdom teeth out only two days before coming to Tulsa, so he needed time to heal. We brought stacks and stacks of records, films, and reports from the doctors in the Seattle area. We had been told that whatever our decision Gene needed to start treatments as soon as possible. On Thursday, we met with the oncologist. He was the first doctor who ever hugged us. We can’t tell you how much that meant to us. He took the time to answer all our questions, to hear how our concerns and to show the compassion we needed. We were impressed with the whole team concept. At home, we had to fill in all the doctors, had to fill out forms over and over at each doctor’s office and had to drive 20 minutes to each doctor’s office. At Southwestern, a chart went from office to office concerning Gene. We had a pain management doctor, a medical oncologist, a radiation oncologist, nutritionists and metabolic support, a naturopathic doctor, a care manager, and surgeons all in the same complex. What a wonderful concept. We decided to stay.

Gene would need to undergo surgery for a port and a G-tube. The doctors said that he would need the G-tube to get nutrition because the type of treatment he would be getting would cause his throat to be too sore to swallow food. The port was needed for chemotherapy. The doctor prayed with Gene before he went under anesthesia, giving him peace.

The day Gene had the port and G-tube placed, he needed to be kept for observation because of an irregular heartbeat, which turned out to be premature ventricular contractions (PVC’s). An electrocardiogram was ordered and he was on constant monitoring. We had not come for heart problems; we had come to get healed of cancer. We agreed again in prayer and two days later Gene was released from the hospital after being told he may have had PVC’s his entire life and that he was fine. What a relief. Gene began seven weeks of radiation therapy and Cisplatin every three weeks.

After treatment, Gene was not able to keep any food or water down for two days. Infusion was there 24/7. When we needed anything, when the doctor’s office is closed, and we needed a refill, the nurses in infusion center were exemplary. Medicines to fight off nausea (Reglan, Zofran, injections) did not work. Gene was put into the hospital to be intravenously fed. He was hospitalized for only a week. Later we found out that this was a miracle because the doctor thought that Gene would need to be in the hospital for the rest of his treatments. Gene had told him we wanted out ASAP. Gene was released the next day. He would need to continue feedings through his G-tube in the evenings to keep his body weight up. He began to eat and has not stopped since. The doctors are amazed. They changed his chemo to FUDR and Gene did not have the same side effects as he had with Cisplatin. We needed to see an ear, nose, and throat specialist, to determine if the tumor had grown into the nasal cavity. He told us that the tumor was shrinking and he prayed with us. You just don’t get that anywhere else. We definitely did not get that at home. Gene began to see the doctor on an outpatient basis and we were able to stay in the guest rooms. This gave us the opportunity to attend healing school on the Rhema campus. Transportation took us over there every morning. They also kept us informed of what was going on around the Tulsa area.

Thankfully, there were washers and dryers on every guest room level and since we only packed for seven days, we needed it. Guest room services were wonderful. Someone had given us a gift certificate to Blockbuster video and guest room services told us they would be able to play any of the videos on channel 15, just let them know when. The videos made Gene laugh and laugh. The Bible says that laughter is like a medicine and we believe it. We ate dinner with other cancer patients and their families and were amazed at the stories and the family atmosphere that we encountered. We have made life long friends who call us and email us all the time. We were blessed to have access to a computer to do so. Since we have a computer consulting business at home, word had gone around that we could answer questions, and people started knocking on our door. One day in Focus Group, Gene said he was bored and asked to teach a computer class to the patients. He was able to give two classes informing patients about the Internet and getting their emails. The IT department was helpful in setting up the classes.

Gene put his focus on the future, on our business back home, and getting back to our church with our friends. The doctor ordered a PET scan, to determine signs of activity in the nasopharynx and in the chest near his aorta. The doctors correlated it with the chest CT and believed that the cancer had moved to the lymph nodes in the area. We prayed again believing that we came here for a healing. They arranged for us to see a cardiovascular surgeon, to do a biopsy of the lymph nodes in Gene’s chest. They did not find enlarged lymph nodes, only fatty tissue. They asked the doctor to get enough tissue for a tissue culture, but there was not enough to do so.

The pathology report came back benign. Gene had a head/neck CT scan and MRI a few days prior and Dr. Kelly told us that the nasopharynx looked normal. We have been seeing our naturopath, who prescribed some supplements and Gene’s energy went through the roof. We believe the supplements were successful in working with the chemo and radiation therapy toward a success. The tumor had reacted well to treatments and Gene is on his way to a cure.

We praise God for bringing us here. We prayed that God would send a team with wisdom and compassion, which would treat us with grace and dignity, would pray with us and listen to our concerns. We were not just a patient and his wife. We are people with feelings. Everyone we know who has come here has said one thing to us and we believe it too: this truly is a wonderful place.