PROLOGUE
 
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain nor cancer*: for the former things are passed away. (Revelation 21:4, *my interpolation)  
 
Many people have asked me if I'm angry with God for this horrible thing that has befallen my family. I can honestly say no, I'm not angry with God; He didn't cause our problems. I am angry at the cancer that has invaded my and my son's bodies. I am angry that we stand so powerless in the face of this disease; that there is very little medical science can do for this type of cancer. I am angry that my family had the horrible experience of watching Greg, wither and die and that they will have to endure watching me do the same.  
 
I am also asked where Nancy and I draw our strength from to face this tragedy. My answer is the source of all strength, Jesus Christ, my Lord and Savior. I know Nancy would answer the same. I don't pretend to understand why this has happened to my family. I probably won't be given an answer in this life. I do know that God has been with me through this battle, and will give me the ultimate victory over this disease (see above).
 
 
What We Don't Know... Can Kill Us
 
Our story begins in the summer of 1994, when, at the young age of 17, our oldest son, Greg, began having the symptoms of what would later be found to be colon cancer.
 
Greg had always been very healthy. We would often joke that the only times Greg had been to see a doctor were when he was born, and when he had an ingrown toenail. This was pretty close to the truth. Just a year before all this started, Greg had shared with me that his greatest fear was going through surgery. Now, he would have to face his fear.
 
Like any other 17-year-old, Greg was spending his summer working his first "real" job, painting fences for ranchers and farmers, and helping to herd cattle. He was earning money to buy the drum set he wanted; the one he would later learn to play while undergoing chemotherapy. Greg began having chronic diarrhea, and was going through anti-diarrheal pills like they were candy. While his chronic diarrhea was a concern, Greg was working around cattle. Perhaps he'd picked up some sort of "bug" we thought.
 
Having your Birthday in August like Greg puts you at a disadvantage when starting school. Because of this, Greg had repeated First Grade, so at 17, Greg was starting his junior year in high school. Standing 6'-4", at around 240 pounds made Greg a natural for basketball, and like years before, he was on the team.
 
We weren't very concerned when Greg began losing weight, because they were running him pretty hard in basketball. But the day he came home and told us the coach asked him if he'd ever had problems with asthma, we began to see something wasn't quite right. Greg was having trouble running. He seemed unable to catch his breath and had trouble getting down the court. A visit with a doctor (I'll just refer to him as Dr. S.) reassured us that nothing was wrong; he'd just been running a lot. The diarrhea? Well, Dr. S. thought that must be some bug he picked up. There were a lot of "bugs" going around that year.
 
Greg was getting worse. He became so sick we kept him home from school for several days as he spiked a fever. Once in the middle of the night, after he'd been vomiting, we found him in the hallway on the floor writhing in pain, he also had fresh blood in his stool once. We didn't know it at the time, but the tumor had broken through the bowel wall. The high fevers were caused by fecal contamination of the abdominal cavity.
 
We had a very good friend that died in February of metastatic breast cancer. We were attending her funeral while Greg was home so sick he could hardly get out of bed. We had no idea that a monster was growing inside him too. I recall Nancy and I talking after the funeral about how difficult it must be for her family to go on without her, and how we hoped that we'd never have to go through anything like that. Little did we know we were about to be plunged into our own "cancer hell."
 
We had several more useless appointments with Dr. S. Even with an obviously very sick child, he refused to listen to our concerns and dismissed our attempts at diagnosis. He even insinuated that Nancy was "nuts" for thinking Greg was seriously ill. The last time she was there with Greg, he gave her a pamphlet on irritable bowel syndrome and sent her on her way. In retrospect, many of the cancer warning signs were present; shortness of breath, rapid weight loss, sudden change in bowel habits, night sweats, pain, even an elevated white count. With no experience, we just didn't know what we were looking for. A health care professional however, has no excuse for not recognizing the signs.
 
The turning point came on Friday, March Third. Nancy had called the doctor's office that morning to try to get Greg in to see the doctor. We were desperate, Greg was very sick. We waited all day for the doctor's office to call back. Finally, Nancy called them back about 4:30 to find out what was going on. The receptionist laughed and said, "I forgot to tell you, Dr. S. is gone on a skiing trip, and won't be back until next week." Nancy was furious and demanded that they get Greg in to see a different doctor. The receptionist said we could take him to see Dr. Ferguson if we could get him there right away. Nancy loaded Greg up in the car and headed for Salina.
 
 
"Your Son Has Cancer"
 
Dr. Ferguson turned out to be a blessing. We are sure God brought her into our lives just when we needed her. Had Dr. S. been the one to see Greg that day, he probably would not have survived. Her genuine concern shown through as she examined Greg and was able to feel that his spleen was enlarged. She immediately knew something wasn't right and called in a gastroenterologist (GI), Dr. Alsop. He immediately ordered a stool sample, which came back the following Monday, showing the presence of blood even though it wasn't visible. A colonoscopy on Tuesday revealed the source of the blood to be a large tumor, almost completely blocking the colon. An initial pathology test was negative for malignancy. Dr. Alsop cautioned us, "The slice and freeze tests aren't conclusive."
 
Dr. Ferguson called us Wednesday, and told us to come to her office; she didn't say why. The 35 miles we had to drive to get to her office seemed like it took an eternity. I'll admit, I already knew what the results would be. We have a two volume set of home medical reference books that my mother bought us years ago. I had looked up colon cancer after Greg's colonoscopy. What I read sent a chill through me. It said: "Colon tumors were almost always malignant."
 
Nancy, Greg and I were packed into a small exam room. Greg sat on the exam table, his long legs dangled over the end. Having only known us for 5 days probably made it a little easier for her to say, "Your son, Greg, has colon cancer." Nancy and I just looked at each other, although expecting it, to actually hear her say the word "cancer" was still a shock. How can someone get it at 17? Greg had never smoked, didn't drink. How could this be?
 
I knew colon cancer was beatable. My older brother had been diagnosed with it just a few years before when he was about 40. In fact, when he heard about Greg, he called me to reassure me that it was treatable. He was doing fine and felt that if they caught it soon enough, Greg should too.
 
Surgery
 
We checked Greg into the hospital that night so that surgery could take place the next morning. Greg had never been in a hospital before and was terrified. In retrospect, I should have stayed with him that night, but not knowing what would happen, I hadn't brought anything with me and needed to go home. After some difficult goodbyes, Nancy and I went home to get some rest and a few clothes. I don't think any of us slept much that night.
 
When we arrived at the hospital, Greg was in the shower. The nurse told us he'd had a rough night. They had "stuck" Greg several times trying to get an I.V. started. He was too frightened to sleep and had cried for part of the night. By the time they came to take him to surgery, our pastor and another good friend had arrived to sit with us through his surgery. Pastor Cross offered a prayer and tears flowed while we hugged our son, not knowing what was to come.
 
When what was to be a simple procedure lasting about 2 hours had run on over 3 hours, we began to worry. Our fears were not unfounded. When Dr. Macy (the surgeon) and Dr. Ferguson came out to talk to us with tears in their eyes, they didn't even need to speak for us to know Greg's cancer was much worse than anyone had thought. The tumor had broken through the bowel wall and "fingers" from it had gone to the spleen, pancreas and stomach. The spleen had to be completely removed, 20% of the pancreas and 30% of the stomach were also removed. It looked like Greg wasn't going to live much longer. A scrub nurse told us that when they opened Greg, they just stood in shock looking at the enormous mass. They didn't know where to start, or how much to take. Nancy and I were so upset; we didn't even hear half of what Dr. Macy told us. I had to stop him in the hall later and ask him to explain the surgery again.
 
It would be awhile before Greg was out of recovery and settled in ICU. It was after 1pm, and although Nancy and I couldn't even think of food, our friends took us down the street and bought us lunch. Neither one of us remember much of that meal.
 
When we came back to the hospital, I went to Greg's pre-surgery room to gather up the things we left there thinking Greg would be returning after surgery. We had no idea the surgery would be so extensive he'd have to be put in ICU. In the hallway, on the way to get his things, I met one of the nurses that helped to ready him for surgery. She stopped me and told me we should get in touch with hospice. My tears began to flow as she reached for me and held me while I cried. "This couldn't be happening, could it?" I thought.
 
Having never been around anyone who had gone through major surgery, I didn't really know what to expect. For what he had been through, I thought he looked pretty good. He was in pain, but they were taking care of it with an injection of Demerol. In a soft voice, Greg asked, "Dad, do I have one of those... you know... pee hoses?" "You mean a catheter?" I said. He nodded. "Yes you do, Greg," I replied. He gave an indignant grunt and said, "I gotta pee really bad." I told his nurse of his discomfort upon which she checked his "pee bag" to discover it to be almost empty. As she pulled back slightly on the catheter, his bladder emptied quickly into the bag. "The catheter was up against the bladder wall," the nurse said, "happens all the time," she furthered. With Demerol on board and a happy bladder, Greg drifted off to sleep.
 
The hospital was very accommodating. A room was provided across from ICU for us to sleep in. Exhausted and terrified, this was the first chance for Nancy and I to be alone. We just held each other and cried. Our son was across the hall in ICU with a disease that would take his life. Needless to say, we didn't sleep much that night.
 
The next day, they moved him up to the oncology floor. Greg was so tall they had to find an extra long bed to put him in. From then on, one of us slept in Greg's room on a rollaway bed while the other either stayed home or slept in a room down the hall.
 
Sunday morning, before she went to church, Dr. Ferguson stopped in to share the pathology reports that she had just received. It was very good news. Even though the tumor had broken through the bowel wall, the "fingers" that had reached several organs causing portions to be removed turned out to be infection only. No cancer cells were seen in those biopsies. It was indeed a miracle; Greg's life had been spared. Even so, it was still very serious. Chemo and radiation would need to be done in order to give Greg a fighting chance.
 
Greg's recovery was a very slow process. He had to be readmitted a few weeks after his initial surgery to clear adhesions and scar tissue that were blocking his digestive system. Months of chemo and radiation followed, but amazingly, Greg was all finished by the time his senior year of High School started, allowing him to complete school on time.
 
It took almost a year for Greg to completely heal. The doctors watched him closely for the first five years, wary of a recurrence that never happened.
 
 
Like Son, Like Father
 
It was July of 1999. I was suffering with a wrist injury incurred during an auto accident the previous November. Although surgery had been done, the pain from nerve entrapment had become much worse because the joint was still unstable. The experimental procedure done in February had failed and the doctor that did it wouldn't help me. All he told me to do was take ibuprofen and, "learn to live with it." After seeing him for the last time on July 1, I was in search of a doctor that could help me.
 
The wrist injury had made it nearly impossible for me to work for months and as a result, I had lost most of my business. The few remaining contracts were way behind schedule and it was looking like I was about to lose them too. Although my customers understood my situation, they also needed work done and I couldn't do it until I had a working wrist that didn't leave me in terrible pain.
 
Attempts at working usually left me in so much pain that several times, Nancy, had to take me to the ER in Lindsborg for pain shots so I could sleep.
 
I had been going through ibuprofen like it was candy in an attempt to dull the pain of trying to use my wrist and had begun to have stomach problems because of it. I'm sure the stress of loosing my business wasn't helping either. I had never had ulcers or acid reflux so the sudden onset of bad abdominal pain was concerning.  
 
Greg and I flew to San Francisco on the 8th of July. We rented a car and drove to Davis to make repairs to a pipe organ I had built right after Greg's first bout with cancer. I needed Greg along to be my "hands," doing things I couldn't do.  
 
The whole time we were there, the pain in my upper abdominal area became worse. Before we came home on the 12th, I began having foul smelling belches, really bad, like something dead. I'd never had anything like that before.
 
I went to see my primary care doctor, Amy, the day after I got back. She thought I'd given myself an ulcer from all the ibuprofen. She started me on Prevacid, told me to stop taking the ibuprofen and gave me a prescription for Hydrocodone based pain medicine. She also referred me to a wonderful orthopedic doctor who cared about my situation, and was determined to help me.
 
I saw the new ortho the next week. The first thing he did was to schedule a stellate block to rule out RSD. He also sent me to a hand therapist that worked with me for about 6 weeks. My wrist improved a little with the therapy, but by the first of September, it was obvious I needed surgical intervention. He sent me to a hand surgeon in Wichita who agreed surgery was the only way to correct the problem.
 
Meanwhile, my gastric problem was getting much worse. I needed more and more of the pain pills prescribed for my wrist, but now for my stomach pain too. I became very concerned at my youngest son's first football game, September 2, when I took a bite of a hamburger and it wouldn't go down. It just got "stuck" at the end of my esophagus. It finally went down, but I was very alarmed.
 
That night I looked up esophagus in the same medical books that helped me figure out what was going on when Greg was sick. The only thing I could find that matched the symptoms was esophageal cancer. I told Nancy of my discovery, "You don't have cancer," she said. I replied, "I sure hope not! According to this book, hardly anyone survives esophageal cancer." We dropped the subject, but I couldn't get what I had just read out of my mind. The survival rate of 10% to 15% it mentioned was terrifying. We had just lost a dear friend to pancreatic cancer, another one with a very poor survival rate.
 
Over the next few days, more things were getting stuck and I was getting more worried. I went to see Amy and told her all that was going on and what I had read about cancer. "I suppose it could be cancer, I doubt it; still, you have family history." She said. I insisted she schedule an upper GI.
 
The upper GI just showed a little narrowing in my esophagus where it met my stomach. Both of the doctors that read it weren't very concerned, but I still was and insisted on having an EGD (endoscope down the throat) as soon as it could be done. I also insisted on having Dr. Alsop do it.