Prologue

This post is out of sequence, but provides a complete summary of my two year journey to this point. I hope this story will motivate you to actively research and partner with your doctor and ask questions to learn your way through whatever personal or family health situations you face.

Over Christmas of 2005, I sensed the beginnings of a sore throat. I took AirBorne to fight the virus. Early sensations of a sore throat continued off and on through the balance of the winter. However, I never had the traditional body aches that accompany a head cold. Over spring break, I visited my family doctor who prescribed antibiotics to fight the symptoms.

By late June and another trip the family doctor, I moved to an ear-nose-throat specialist. After a few rounds of treatment that brought short-term, but no long-term success, he ordered a head and neck CT scan. The films did not reveal anything unusual. The ENT continued more tests and treatments including a biopsy of my right lingual tonsil in November of 2006. Test results showed no abnormalities.

Through 2006, difficulty and pain swallowing continued to build in waves, but the pain was never accompanied by body aches or fever. Each wave resulted in more intense symptoms. What began as minor irritation with swallowing and eating early in 2006, advanced to a narrowing set of foods in my diet. Bulky foods like Raisin Bran, heavy breads and meats took a lot of effort and were painful to eat. I also began taking Ibuprofen in the early fall to help manage the discomfort brought about by eating and playing my trumpet.

In January of 2007, my ENT physician decided it best to tap into University of Kansas Medical Center expertise. The second specialist I saw at KU Med suggested I had all the symptoms of a nerve disorder called glossophyrangeal neuralgia (GN). He prescribed anticonvulsant drugs, which provided quick and noticeable relief. However, after several days the improvement in pain faded, and returned to previous levels. It was recommended I up the dosage, which helped for a few days and then the pain and inability to swallow returned. This pattern is typical for GN patients.

Given the GN diagnosis fit my symptoms and the treatments had some positive results, I searched the Internet for experts on this neuralgia. I discovered several references to a physician in Pittsburgh who devised a surgery to resolve the neuralgia for which I had been diagnosed. I sent an email to him and went to see him in July. He prescribed a more aggressive anticonvulsant and we discussed surgery options.

In late June, I began to notice minor changes in my speech. By August speaking had become difficult all of the time, and I my speech sounded similar to a deaf person. Additionally, discomfort in my throat was now constant. GN symptoms are sporadic, not persistent. A clue I recognized and brought up with my doctors, but nerve disorders manifest in many different ways.

After several delays scheduling surgery, a November first date was set for an operation that would decompress blood vessels surrounding the ninth cranial nerve. This point in the journey marks a dramatic shift in my path to a cure for this ailment that began nearly two years prior.

Day of Scheduled Brain Surgery
The morning of November first, I remember seeing 11:50 AM on the wall in the operating room. The next I recall I saw 12:45 PM on the clock and wondered if all was well. I expected to be out of surgery after 2:00 PM. I was sedated, so I was not panicked, but I knew something was not right. The physician came so see me about 30 minutes later and told me they were not able to intubate (insert an air tube) me and had to cancel surgery. He ordered CT scan of my neck and informed me I would be in the hospital through the next day. He had secured their best ENT group to begin additional diagnosis.

On November second, the surgeon stopped by my hospital room in the morning to let me know he read the CT, but there was still more work to be done. Later that morning three pathologist came to my hospital room and each performed a biopsy of the lymph node in my neck without any anesthesia (Ouch!). They used a portable lab to read and discuss their findings outside my room. Another hour or so passed until an ENT stopped in to perform his evaluation. Theresa and my mom had left earlier for lunch. When he finished, he announced both his exam, the CT scan and the pathology results indicated I had cancer.

After the ENT left the room, I sat somewhat stunned by myself for perhaps 20 minutes or so. I used my iPhone to research what I assumed I had, cancer in the base of my tongue. When my Theresa and mom returned, I informed them of the new diagnosis. We grappled with it and I shared the web sites I found, which pointed toward a wide range of cure rates. There was a still a lot to learn. I asked for some paper and we began to plot a plan. The doctors suggested we head back to Kansas City to gain a second opinion.

We were discharged from the hospital around 4:00 PM that afternoon. We decided to drive back to KC that evening. As one could imagine, we just wanted to get home and begin dealing with this situation. We checked out of the hotel and hit the highway for KC by 5:30.

The trip back to KC was surreal. The good news is we finally knew what battle we were fighting. Our conversation was centered on our faith and positive actions we should take. My brother lives in St Louis. We were able to have lunch and spend time with Greg on Saturday.

That evening we arrived at home and broke the news to Elliott and Audrey. It was an emotional time. We focused our conversation on our faith and beliefs, and did our best to center and ground the family in preparation for this trial. Since the kids were young, we have set aside family time to study our faith and beliefs. Theresa and I always believed our primary role, as parents, is to instill values, beliefs and meaning from which our kids can make quality choices. No, our kids have not always made the best decisions, but we have done our best to give them the tools to make good choices. While Theresa and I are watching the kids closely nowadays, its good to see the wisdom we have taught them come to the surface in their words and actions.