Ronnie's Survival Story

My name is Ronnie Trentham I live in a small town in Oklahoma near the Arkansas border and my story starts back in 1994 when I was diagnosed with sarcoiodosis which is similar to lupus. After a six year fight with that disease I felt like I had it under control. Then in 2003 on a visit to my ENT Dr. Childers she asked me about a sore in my mouth. I told her that it had been there for a few days and that I must have bitten my cheek during the night. So she took another look and then gave me a prescription for some mouthwash and asked me to use this for a few days and to call her if it wasn't any better. Well three days later it was worse so I called and was seen again, this time a biopsy was done and tissue sent to the lab. At this point my wife and I were a little worried but not too much. Oh, by the way my wife Lorie a nurse, works at the hospital with Dr. Childers. So a few days passed and the doctor called and wanted to see us as soon as possible. We went to the office and Dr. Childers said I'm so sorry to have to give you this bad news. Ronnie, you have cancer. Then we were really worried!! We talked about this thing called squamous cell carcinoma, it was then that I found out what a great person my doctor is, she asked us if it would be alright to pray for us before we leave and I said yes please!

Then we started our fight against cancer, I say we because I have never been alone in this battle, I have the most amazing wife, daughters, family and friends. Ok, now we have to deal with this cancer, so we found a doctor in Tulsa and had it removed within a week of diagnosis. There were problems with this first surgery but we got past them and moved on. Soon after surgery I had radiation therapy to try to eliminate any cancer that might have been missed.

In the following months I started noticing that I was having trouble opening my mouth, I had developed trismus, as a side effect of treatment. Even now I can only open wide enough to put one finger between my front teeth. Over the next few months I learned to deal with the trismus and my mouth healed pretty well, or so I thought. I was close to being forty years old and had always had good teeth, but one morning I woke up with a toothache. This was the first one that I have ever had so I knew something was wrong. The pain was on the same side as the cancer had been so I went to the doctor that day. After talking to my doctor and my dentist I had two teeth pulled and a tissue biopsy taken. When the results came back we were told that the cancer was back in the jaw bone and immediate action was needed.

I asked Dr. Childers to help me find a doctor who could do this surgery. Two hospitals rose to the top of the pile, Oklahoma University Medical Center and M. D. Anderson. OU was our first choice because it was closer, a three hour drive instead of twelve (the first of many drives) and when we get there my wife and I meet Dr. Jesus Medina. Dr. Medina brought several doctors into the room with him and talked to us as he examined me. Next he took us to another room and put a scope up my nose and down in my throat. When he finished his exam he told us just how serious the situation really was and about our options. Option 1 would be to go home and try to manage the pain with meds and I would have only 3 to 6 months to live. Option 2 meant having this big surgery that would remove part of my jaw bone, replace it with a piece of bone from my leg and a major neck dissection, and that I would have a tracheotomy and a long hospital stay. Dr. Medina goes on to explain the risks with this type of surgery and asks us to go home, talk it over, and let him know what we want to do. This was a very big decision!!

At this point I turned to look at my wife and she is crying, I ask her if she understood what the doctor was telling us and she said yes. Next I ask if she needed time to talk about this, I think she said no, but she was still crying so I might have misunderstood. I turned to Dr. Medina and said," I'll take the surgery doc and we can start now if you have time". The decision was big, but for me it was easy. Because my wife and I have these two beautiful girls at home, and they give me reason to LIVE!! So I had the surgery. Dr. Medina took the part of bone with the cancer in it out and Dr. Sawan took the bone and tissue he needed from my leg and put me back together.

Now I need to tell you that I love life and it is rare that I'm serious I like to joke with people and have a good time. Ok I need to back up for a second, when Dr. Sawan explained his part of the surgery he told me that I will grow leg hair in my mouth. All this time I had made little jokes here and there so I think he is pulling one on me. Well guess what? He wasn't joking. It took a little while to grow and for me to figure it out, but one day I started feeling something weird in my mouth and just couldn't get it out. Sometimes I tell people that I looked like a handicapped dog eating peanut butter and later I told them I was growing my own dental floss. My family and friends laugh with me, and I think it helps us all to deal with the situation. Now you should know that I take cancer very seriously but laughter is often good medicine. Ok, back to the surgery, Dr. Medina had explained it all very well and told me it would not be easy, he was right I was in ICU for five days and it was very painful!! I was trying to be a good patient and trying not to let my wife and girls see me hurting but I'm afraid they did. They gave me a little button and told me when I felt pain to push it for pain meds. I must have pushed it a thousand times, I think it was broken. I'm not sure which hurt worse, my leg or my jaw, but I can tell you the pain button was getting a work out.

That was the biggest surgery I had and we all hoped it would be the last, but there were more to come. The cancer came back twice in the roof of my mouth, once in the left side of my neck and then the right parodtid gland. So six cancers and six surgeries! However after number SIX the decision was made to have chemo and radiation. My chemo was done at Highlands Oncology and my radiation at NARTI, both in Fayetteville, Ark. It would take a lot longer than I have to tell you about the great bunch of doctors, nurses, and staff that took care of me at both places. So I'll just say they were great and I still go by to see them from time to time. I was given erbitux once a week for seven weeks. I also had an amifostine shot each day 45 minutes before my radiation treatments to try to save some salivary response.

Our first meeting with the radiation doctor started off kind of bad because he wasn't sure if I could have any more radiation. Dr. Ross was going over some of my records and was worried that I might have had too much in that area. Here again my amazing wife and caregiver had brought the port films from the first round of radiation with us. After looking at the port films he got excited and turned to us and said," I think I can help you"! He started telling us what he thought was the best plan for me. The next thing he said really told me we at the right place, he said," this cancer has been mean to you long enough, lets be mean back"! I loved that attitude so I told him I was ready! This was also the first time I had heard about SPOHNC, one of the patient advisors told us there was a group that met in Fayetteville. On the way home my wife tells me I should go and I told her I didn't think I was interested. Days go by and treatment wasn't too bad at first but by week three I was really sick and tired. This treatment was a lot harder than I thought it was going to be.

At this point I was very glad Dr. Ross advised me ahead of time to get a port and peg tube before I started treatments. I started having burn sores inside and out which made it very hard to eat. The port was a blessing because my veins were not very good. I was having a tremendous amount of mucus and thought it might drown me! So we rented a portable suction machine and I slept in a chair because I couldn't lay flat without choking.

The great news is my wife finally talked me into going to a SPOHNC meeting. There I found help with the problems I was having and support from people that had been through similar things. SPOHNC has been great for both me and my family during my fight with cancer. I enjoy volunteering and talking to people in our meetings and through the survivor network and I hope that I have been a help to others who have had a similar battle with cancer.

I am entering a new chapter in my life through the American Cancer Society Heroes of Hope program; hope to share more of this with you later.

-Ronnie Trentham
Stilwell, Oklahoma
contact@ronnietrentham.com