The diagnosis

WARNING! I'm sure this will be the longest post I'll ever write but I wanted to include all the details.

I started having discomfort in my left ear/jaw area in January and at my regular six-month dental cleaning I told my dentist I thought maybe I had an abscessed tooth. She took an x-ray and everything looked normal. I saw my family doctor on January 7 and she said I had fluid in both my ears but my left ear definitely had more than the right and my sinuses were congested, but no infection going on. She prescribed Flonase nasal spray and instructed me to give it a try and to stop using it if things cleared up. On February 26 I returned because I wasn't better and I was going to fly to Hawaii for work on February 28 and I was apprehensive about flying with my ear feeling so congested. She told me I'd fought it long enough and put me on Amoxicillin. I finished the prescription in Hawaii and felt pretty good. I'm not sure if I really improved but it's hard to be miserable when you're in paradise!

After being back home for a week I thought I had a UTI and went to Immediate Care and sure enough I was right. While there I asked the nurse practitioner to look in my left ear and at my throat. My throat had started feeling a little sore on the left side and she offered to do a strep test but I declined. I've had strep throat and knew that wasn't the problem. She put me on an antibiotic for the UTI.

My symptoms kept getting worse...increasing pain in my left ear and jaw, intermittent numbness and tingling on the left side of my tongue, sore throat on the left side only, lots of sinus drainage, a really bad taste in my mouth and visible swelling on the left behind my back molars. I even put my fingers in my mouth and the left side was hard to the touch. I had also started having trouble opening my jaw and it was very painful when I forced it open all the way. I returned to my family doctor on April 24 and told her my symptoms and said, "I think I have cancer. My symptoms fit the bill for tonsil or jaw cancer." She said, "Oh you don't have cancer and I don't want to send you to an ENT at this point. They would think I'm crazy. I want you to do a saline nasal rinse every morning, follow it with Flonase and take an over-the-counter allergy medication. Do this every day and if you aren't better in a week or two I'll send you on." I followed her instructions and didn't improve so called and requested to be sent to an ENT.

I saw the ENT on May 6 and he basically blew me off. I gave him the run down of my symptoms and even showed him on his wall diagram where the visible swelling and hardness was located on the left side of my throat. I told him I thought I had cancer. He said, "You don't have anything bad. You probably just have some inflammation left over from the virus you said you had. As fast as this showed up it will go away. You will wake up one day and it will just be gone. Why do you want to have something wrong? You need to stay off the internet. And quit taking the Flonase and OTC allergy medication. You don't have allergies and you're just throwing your money away."

Well, it didn't go away but I kept hoping it would. The ENT said it would and he's the expert, or should be anyway. On July 9 I went to the dentist for my regular six-month checkup and cleaning. My hygienist asked how I was doing and I told her about my ear/jaw/throat problem and reminded her about me thinking I might have an abscessed tooth in January. She took one look in my throat and about fell off her stool. After making many calls the only ENT they could get me into quickly was...you guessed it, the same one I saw in May. Yippee!! I went to see him on July 11. I told his medical assistant how he blew me off in May and now my symptoms were 100 times worse. He came in and apologized for "blowing me off" (yes, that's what he said), looked in my throat and, I kid you not, said, "Oh my God, I made a mistake." He did a biopsy, it came back as cancerous but he didn't get enough tissue for them to make a definitive diagnosis so I had another biopsy four days later and it came back as squamous cell carcinoma.

On July 24 I had a PET scan which showed the cancer in a very pretty bright yellow. Funny how it just lights up after they give you the IV radiotracer. I've seen a Radiation Oncologist and a Medical Oncologist and they are supposed to be coordinating my care. The plan at this point is to start chemo, Erbitux, this week and continue the chemo once a week for four to six weeks. Next week I'm supposed to start radiation which I will have every day for 30 days. If today is any indication of how this is going to be coordinated I'm not so sure about the situation. Last week the Cancer Center told me they had to get approval from my insurance before they could start the Erbitux. Since today was Tuesday and I hadn't heard anything I called my insurance company to inquire about the status of the approval and was informed that approval is not necessary and the chemo could be started at any time. So, I went to the Cancer Center to drop off my FMLA paperwork and to find out when they could schedule me to start. They couldn't tell me so hopefully I will find out tomorrow.