My name is Wayne Call. I am 54 years old. I have been married for 32 wonderful years to Adrienne. We live in Queen Creek, Arizona. We have five amazing children and seven beautiful grandchildren.
In about February or March of 2011, a friend of mine mentioned that I had a mole in my upper left ear. I had never noticed it & could not see it. He suggested that I get it checked. I did not think anything of it until about September. At that time it started itching. I would scratch it and eventually a scab developed. I would pick the scab, it would heal over & I would pick it again. Each time the bleeding would last longer & I had to apply pressure harder for it to stop. I still did not think anything of it until one night while lying in bed I felt this burning sensation on my ear, my cheek, down the left side of my neck, and under my armpit. I said something to Adrienne about, but we sloughed it off. The next night the pain returned again & was more intense. It scared me a bit. I called a dermatologist the next day. They got me in about 2 weeks later.
He did a “full body” examination, and when he saw the mole in my ear he was very concerned and said that it did not look good. He cut the mole out to the ligament, as far as he could go in my ear, and sent it off to be biopsied. He called back 5 days later and asked that my wife come with me to see him. Obviously that raised a red flag, and we were both very concerned and worried. When we saw him he explained that my mole was over 4mm in size and that it had already perforated and ulcerated, which meant it was now below the surface of my skin.
He immediately sent me to a surgeon and oncologist who specialized in ear, head, & neck and could do lymph node dissections. We ended up going to the University of Arizona Medical Center and met with Dr. James Warnakke. He reviewed my pathology report and said they needed to do some blood work to see what my LDH level was. He explained that more than likely he would have to do surgery and would need to remove a “small” part of my ear. We scheduled the procedure for 2 weeks later on November 2, 2011.
In the meantime, we had a daughter that was getting married, and we were having the reception in our back yard. I had lots of work to do and did not want to spoil this very special occasion & ruin her wedding. I felt fine most of the time & we were able to have a beautiful reception in our back yard. Two days before the wedding, the doctor’s office called and said that my LDH level was extremely high, which meant that more than likely the cancer was in my lymphatic system & had spread. I did not want to tell my wife or children and ruin the wedding, so I kept it to myself, which was very difficult.
Following the reception on a Friday evening in October, we all sat down to relax, & all the rest of our children said, “Ok Dad, we need to talk and we want to find out what’s going on.” I explained everything up to that point, and then I broke down for the first time and told them about the elevated LDH level, which my wife Adrienne did not know yet. I explained what that meant, it wasn’t a for-sure thing, but as high a number that mine was, it was a very high probability that the cancer had spread. We all cried, we were all stunned, and we cried some more. I told them all that we have a very close knit family, we have a large extended family, we all love & respect one another greatly, and most of all we trust in God; we have a great faith the Lord is in charge. We knelt down & had a wonderful family prayer, and I was at peace with where things were headed.
One week later on November 2, 2011, we went down to the U of A Medical Center to perform the surgery. It ended up being over a 6-hour-long surgery. My wife was the last one there in the waiting room. Periodically a nurse would step out & update her “somewhat” with what was going on but not a whole lot of detail. Finally at about 9:00PM, Dr. Warnake came out. He explained to her what had taken place. A few days before the surgery I had noticed two lumps that had developed behind my ear, and they were very tender & fairly big. Anyway, he explained how they removed a portion of my ear, cut into my skull to try and get “clear margins,” and then cut down my neck to my chest. They had removed 40 lymph nodes, six were cancerous; the two tumors behind my ear were removed & were cancerous – 12mm and 14mm. They took out my parotid gland and saliva gland, which were both cancerous. I had Stage IIIC malignant melanoma cancer. It was a very intensive surgery and affected hundreds of tendons, ligaments, and muscles that he had to cut into.
The next afternoon when I was finally somewhat aware of what was going on and in TREMENDOUS pain, the nurses came into change my bandage. I told them that I wanted to see what had happened. They were reluctant to do so, but I was persistent. What I saw next I WILL NEVER FORGET. It was devastating. They had removed over 60% of my ear, they had an 8″ incision curving around my cheek, down to my chest, and a big hole in the side of my head where they removed my ear. It made me nausea and weak looking at it. I had not expected that at all. Anyway, my wife Adrienne had come back in with my sister, and she wanted to see it. I told her that I highly recommended that she wait. Like me, she was persistent. When they uncovered it, she gasped for air, put her head in between her legs, nearly fainted, and cried uncontrollably for several minutes. It was very difficult for me to see. We hugged, cried together, and held each other for a very long time. I told her that we would get through this – together.
My journey with cancer was only beginning. I was in tremendous pain. I have never experienced pain like that. I was in the hospital for 3 days recovering, and then we came home. I was taking a lot of medications to deal with the pain, but nothing seemed to help. I was constantly at an 8-10 pain, on a pain scale of 1-10, 10 being the highest. This lasted for weeks. We tried all different kinds of medications & eventually a combination of Lyrica, oxycontin 40mg, hydromorphone 8mg for break-through pain seem to be the best. To this day, 10 months later I am in constant pain, usually about a 3-5, but depending upon what kind of therapy & exercises I do, the pain will still get above 7-8 at times. It can be very frustrating dealing with the CONSTANT PAIN.
Unfortunately they were not able to get all the cancer out. The doctors wanted me to start radiation as soon as I could. We started radiation the second week of December. It was a very intensive radiation. They made this “Jason” mask where I would get strapped down on a table with this mask over my face. They would do a very high dosage 3 days a week for about 25 minutes, and they did this for 3 weeks through the end of December 2011. My throat became very sore, and I could hardly talk, eat, or swallow … a very painful experience with the sore throat. They did give me some liquid medicine that relieved the pain somewhat, but it took weeks to heal.
During all this time, I had been bombarded with well-wishers, good friends, family members, etc., who all had “cures” for cancer. It was really unbelievable how many people knew that the product they had would cure me. Bless their hearts, but none of them could give me a name of one person who had Stage IIIC and was cured. I contacted a couple of naturopathic doctors and asked for a patient referral that they treated with Stage IIIC malignant melanoma cancer, & none of them would give me a reference. I spent probably 100 hours researching things on the internet. Aim at Melanoma, American Cancer Society, all kinds of web sites. My wife and I had determined that after all the research what we felt was best for me in my circumstance at that time was to do the radiation, followed up by chemotherapy.
I started my chemotherapy in February. It was an IV treatment 5 days a week, which would take about 1 ½ hour or so. I was taking SYLATRON peginterferon alfa – 2b. It would make me very sick. I had nausea & vomiting, 102 degree fever, aches & pains in every joint … it was awful. I would just come home and sleep. I had no appetite and no strength or energy to do anything. I would see all these people who were usually older than me, smaller & tinier, and would think that someone my size, 6′ 1″ 250 lbs, could handle this thing. Boy, was I wrong. It just knocked me flat out on my back. I literally was unable to do anything for weeks.
I did this for weeks, until mid-April, at which time I began to have some other side effects. One weekend, I don’t remember the details hardly at all, my wife said I was acting kind of “funny.” I wasn’t making a lot of sense when I would talk; I would walk real slow & had slurred speech somewhat. She was concerned but knew that we would be going in on Monday for another treatment. By the time I got there I did not know where I was. She told the nurse what had been going on, they immediately put the oxygen thing on my finger and my oxygen level was at 64. They were in a panic. Adrienne said that all kinds of things began to happen. They said I needed to get to emergency immediately. Adrienne said she would just put me in the car and drive me across the street to Chandler Regional Hospital. Literally it was less than one block away. They said, oh no, an ambulance with paramedics will come get me.
Again I don’t remember all the details; by this time I was completely delirious. They took me to emergency, and my wife said that I was screaming at the top of my lungs. It took eight people to hold me down, & I was fighting everything they were doing and yelling out loud, saying things like …”they are trying to kill me,” “this doctor does not like me,” etc. … quite hilarious, but not really. They finally intubated me, gave me oxygen, and put me on a breathing machine. They transferred me to the Gilbert Mercy Hospital in the ICU for the next 4 days. It was a difficult time & painful time. We discovered that my epiglottis had been damaged/burned during the radiation treatments back in December. Everytime I swallowed I was aspirating. My food was going into my lungs, not my stomach, and I had a real bad case of pneumonia. My lungs were completely full of fluid. My epiglottis was not working properly. I failed two swallowing tests while in the hospital, got put on a feeding tube, and was released 13 days later. It was not a good time. I can’t remember the liquid “food” I had going through my feeding tube. I would have to use a pump, and it would take 6 hours to feed me. I would do it once during the day and then pretty much all night. It was not a pleasant time. I do not recommend this kind of diet. Since my initial prognosis of cancer thru May 2012, I had lost 60 lbs. I needed to lose some weight; I just don’t recommend this type of diet.
I did speech therapy for 5 weeks. My insurance would not cover it, but I was so blessed to have a niece Rachelle who is a licensed/certified therapist. She worked with me for 3 days a week for 5 weeks and would not accept 1 dollar from me. An incredible blessing and tender mercy from the Lord. Her employer even offered to do the swallowing test and doctor analysis at the end of 5 weeks at no charge. I was so humbled and so grateful.
I have since passed the swallowing test, and I no longer have the feeding tube. I started Intron injections that were 3 days a week. I got very sick with those, high fever, chills, vomiting, etc. … did that for almost 3 weeks and then became very depressed, could not sit down at my desk and make sense of things, and was somewhat lost. The doctor said I was having a reaction to it and made me stop. We took a break for a few weeks, then lowered the dosage amount and began doing it again 2 weeks ago.
Today I woke up very depressed, tingling throughout my legs & body, and very anxious. I went to see the nurses and my doctor, and they want me to stop again. So I’m not sure what the plan is right now. I’m a bit discouraged by all the reactions my body has had. I DO NOT want to quit; that is not an option. I had a PET scan also today, hoping that it will be clear, no new spread of cancer. I will find that out this coming Friday.
That is my story. I hope it helps others. This is not an easy battle, but with family, friends, loved ones, and trust in the Lord … I WILL BEAT THIS THING and I know that you can to.