Background and Diagnosis
Updated: Aug 2, 2020
To give everyone some background about me, I was born and raised in Wichita, KS. The majority of my side of the family still lives in Wichita. Once I graduated college at Wichita State, I proceeded to make the move to Houston, TX. I made the move to be with my wife and to take advantage of the big market in Houston. Pamela and I have been married 14 years and have two wonderful children named Adisyn and Mason.
When I started high school, I didn't really smoke or do smokeless tobacco. It wasn't until the latter part of high school that I picked up this habit. At the start, it wasn't pretty to watch me try to figure out how to get this stuff in my lip and master how to spit into any type of bottle opening I had. With all of that being said, I honestly can't tell you why I stuck with it all these years later.
After high school, I didn't really stop or slow down on the smokeless tobacco. I tried to quit over the years but was never successful. This could be attributed to not being ready or not having the best will power to stay away. I was that guy, I thought I am young, there isn't anything I have to worry about right now. I AM BULLETPROOF.
After Pamela and I were married, I can't tell you how many times she tried to get me to quit smokeless tobacco. She would constantly tell me to stop chewing, which in return I would agree to stop, but then never do it or find an excuse to not do it. If I did try to quit, it only lasted a few days, then I went right back to doing it. This wouldn't stop her from continually telling me to stop chewing, all the way to the day I actually stopped.
Fast forward to 2020, which is turning out to be one of the worst years I or anyone else have ever experienced as we had been dealing with the Coronavirus Pandemic. Back in late February maybe early March, I noticed that I had a canker sore on the posterior right part of my tongue. Anytime that I ate salty or acidic food, my mouth would be in excruciating pain. I tried so many different types of canker sore products to find something that would give me relief. I came across a product called kanka that would numb the sore enough so that I could eat without the burning and pain. I am not kidding you when I say that I had bottles and bottles (should have bought stock) of this kanka liquid pain reliever.
The reason that I didn't get the sore checked out sooner is because in the back of my mind I was scared to hear that it might be cancer. Most times when something is wrong, people get checked out right away. Before this I was not that person, the one piece of information that you don't want to hear is something major with your health. Yes, it's great to catch anything early, but its the not wanting to know that its something serious and has the possibility to take you out. I would self diagnose myself in order to make myself feel better about what it was rather than find out the truth. I figured since it was on the back part of my tongue, then the moisture wasn't letting it heal as fast.
From February to May, I believe that I mentioned to Pamela one time that I had a canker sore but never mentioned it again. On May 11, 2020, I decided to quit smokeless tobacco cold turkey. That same day or next, Pamela walks into my office and I had so many bottles of the kanka liquid on my desk. If you didn't walk around to the back of my desk you would never see them. I told her that I quit tobacco and she said "Do you still have that canker sore?" I told her that I did, so she let me know that if the canker sore didn't clear up in one week, that I would be going to the dentist. She called the dentist and set the appointment for May 22, 2020, which would be the weekend of Pamela's birthday.
May 22nd came and the canker sore hadn't gone away, so I proceeded to my appointment at Lathrop. This was my first appointment at Lathrop because we had just decided to change our dentist. When I arrived at the office, they took me to a room and asked me to swish some mouthwash. I knew that this mouthwash was going to burn my mouth (and the sore), so I asked if we could skip it. The hygenist asked why and I told her that I had a canker sore that would not go away. She asked if she could take a look and had me follow her to their hard tissue scanner. During this time, my heart is pounding and my blood pressure is rising because of the possibility of hearing any bad news. After the scan, she had me come back to the room and had me wait for the dentist. Dr. Brian Johnson came in to speak with me and to take a look at the sore. I went in on a Friday morning, which I know they are busy, but he proceeded to talk with me and not try to rush me out the door to get to the next patient. He let me know he was concerned about the sore and wanted me to see an oral surgeon he knew. Lathrop had set up the appointment for me to see the oral surgeon that same day.
As you can imagine at this point, my anxiety is through the roof. I drove to the oral surgeon's office to meet with Dr. Justin Brock. Remember, this is all during COVID-19, so I am going to these appointments by myself because Pamela is not allowed to go with me because of COVID restrictions. When I arrive at Dr. Brock's office, they took me back to a room so I could be examined. Dr. Brock walks into the room and we talk for a few minutes about what's going with me and why I am there. He came over to take a look inside my mouth and confirmed that he had the same concerns about the sore on my tongue. He asked if I had time for him to do a biopsy that day. I said even if I didn't I would make time, so I was at his office all afternoon. The reason I was there all afternoon is that I was a last-minute appointment they were working me in where they could. Around 4 pm, they came in to get me and take me back to do the biopsy. After the biopsy, they let me know it would probably take a few weeks to get the results due to the Coronavirus and pathology being backed up.
Waiting for the results of the biopsy made for a roller coaster ride of emotions and mind-wandering. The mind-wandering was probably the hardest for me, I can usually keep my emotions in check. This situation was different, it was harder for me to keep my mind from wandering off into the different paths that the result could take us down. Unfortunately, more times than not my mind would get the better of me and the paths that I went down were those of doom and gloom. Pamela, on the other hand, was completely the opposite, she maintained that no matter what news we received we would get through it. The results ended up coming back 2.5 weeks later, which seemed like a lifetime.
On June 10th, which was Adisyn's birthday, we received a phone call from Dr. Brock's office telling us to come in the next day to discuss results. They said that I could bring Pamela into the office with me to go over the results. Maurice and Jessie, who is my brother in law and wife, ended up taking the kids to their house that night to sleepover so that we didn't have to worry about them while we went to the office the next day to go over the results. On the morning of June 11th, we drove to Dr. Brock's office for our 9 am appointment. The reason I liked Dr. Johnson and Dr. Brock was that they are both straight to the point, no BS type people. When I spoke to them, I said please give it to me straight because I don't need it or want it to be sugar-coated. Pamela and I waited in an office for Dr. Brock to walk in. We were sitting at a desk with Pamela's chair being closest to the door and mine closest to the wall. My anxiety was at about a level 10 with anticipation of the news. Dr. Brock walks in and immediately sits on the desk by Pamela. I looked and Pamela and I either said "Oh shit" or "Oh fuck" because the news couldn't have been good. He said the pathology report came back that the sore on your tongue is cancer. I received what I thought was the worst news imaginable and tried to hold back the tears as much as possible. The office manager came and said they would be getting in touch with MD Anderson to get an appointment set up with a Head and Neck Surgeon they work with there.
Pamela and I walked to the car and I lost it. The thoughts started running rapidly through my mind. My mind immediately takes me to doom and gloom in the worst-case scenario. I remember looking at Pamela asking what are her and the kids going to do if I die? How will the kids be without me? How will Pamela be without me? How will my family be not having me around? How will Pamela's side of the family be not having me around? Have I taught the kids everything they need to know to navigate life? Who will walk Adisyn down the aisle? The sad part of the morning was that I had already started letting the diagnosis defeat me. We came home and sat in silence for a while. Pamela never broke down and always focused on the positive outlook and that we would find a way to get through it. I was focused on the complete opposite.
The first call I made was to Cory, who is my brother. He knew that I went to get a biopsy on the lesion. When I called, Cory picked up and we did our normal quick hello before he asked what the results were. I couldn't even get the words out of my mouth, so I believe Pamela had to tell him. Not a sorry to hear that or I can't believe this, nothing at all like that. He was quiet for probably 30 seconds and said "Well, let all of your emotions run their course today because you have to let them out, but when tomorrow comes you lace them Mother Fucker's up and fight." At that moment in time, this is exactly what I needed to hear. Pamela and Cory completely changed my state of mind for the rest of the day.
After taking a few hours to sulk, I stopped and said "ok, it's time to fight this battle for my family, and no matter what the outcome says we will find a way to rise above and conquer this disease. Later that afternoon, I received a call from MD Anderson about getting registered and appointment set up. In my mind, I am thinking wow this is moving really fast because I just heard the diagnosis today. The person from MD Anderson was taking my information and one of her questions was when did I receive my diagnosis. I laughed and said this morning, which she hadn't run across talking to a patient that received the diagnosis the same day as her calling.
The next big challenge of the day was are we going to tell the kids or wait until we know more information. I am not going to write a lot on this part because I want to do a separate post about the conversation with the kids. We decided that we would tell the kids later that evening because we didn't want them to overhear us talking to someone about it or they hear from someone other than their parents.
We told Pamela's immediate family and my immediate family. These conversations went a lot better than I would've imagined. Everyone was being strong letting us know that they were with us and would help any way they could. At this point, there are so many more unknowns than we know. They had scheduled my first appointment with my main surgeon the next Thursday along with a PET scan and CT Scan.
Remember that all of these appointments were during the Coronavirus Pandemic, so the hospitals were restricting who could come in and out. For each of my visits, I would go the doctors office and I would call Pamela so that the doctor could go over everything with us. I want you to think about that for a minute. Just think that you have this diagnosis of cancer, but you can't have anyone with while going to the numerous amount of appointments. I am not talking just for me because it weighs heavily on your significant other, family member, any person that would be your support. I didn't need Pamela at every appointment, but there are some key ones that would have been great to have her there. To say that we weren't overwhelmed is an understatement.
I went to MD Anderson's west campus for my first appointment with my main surgeon Dr. Kristen Pytynia. She was fantastic about walking me through the different scenarios and what they could look like. She answered all of the questions that I had and she said that the first step would be surgery. Dr. Pytynia scheduled the surgery for July, 14. Again, I wasn't expecting the process to move this fast, but it looked like we needed to buckle up for this speedy ride. After meeting with Dr. Pytynia, I went to have my PET and CT scans done.
What had me the most nervous was the PET and CT scan. This would ultimately tell us what stage I was and if cancer had spread through my body. I finished up both scans, which weren't too bad and they said my doctor would have the results on Friday or Monday. My doctor called me and said that she had a big case tomorrow, but she would try to call as soon as she got the results. The weeks and days leading up to all of this there were many sleepless nights for me. That night was no different waiting for Friday to hopefully get the results. On Friday, I was working in my office, and around 2 pm my phone rings, and the caller ID says MD Anderson. My heart stopped and my stomach turned to knots as I answered the phone call. On the line was Dr. Pytynia, she said I wanted to call you to go over the scans. The only wording I could get out of my mouth was OK. She said your PET scan shows the squamous cell on your tongue like we know ( I was just waiting for her to drop the bombshell of how bad it was), but the scan doesn't show any other areas. The CT scan shows the same results as well. To say that a tremendous amount of weight was just lifted off my shoulders is an understatement. Trust me, I don't cry very much and even my kids will tell you they have never really seen me cry. I walked out of my office to let Pamela know the news and I lost it, not from being sad but excited. Now we know what we are facing and ready to whip some ass!
I had tons of appointments at MD Anderson in the following weeks. My phone seemed to not stop getting dinged letting me know that another appointment had been scheduled. The great part about this was that I didn't have to set any appointments up, they would do that for me. I had to meet with Radiation Oncology, Medical Oncologist (Chemotherapy), Dental Oncology, Plastic and Reconstructive Oncology, and Speech Pathology. I had to get blood drawn several times and take COVID tests, which all were a blast. It's crazy because every appointment I went to they would all say "You are too young to be here at 39 years old."
The big day of my surgery was quickly approaching. We continued to stay positive and strong throughout this whole ordeal. That's not saying that everything was butterflies and roses all the time because there were still ups and downs. At this point, we knew who the beast was and we were ready to slay it.
Also, from the start of this happening my timing has been terrible. What I mean by this is the canker sore was happening in March, which is Mason's birthday. I went to the dentist and oral surgeon on the weekend of Pamela's birthday. We received the call from the oral surgeon's office to schedule the appointment to discuss results on Adisyn's birthday. Pamela and I spent July 15th in the hospital, which was our 14 year anniversary. This is what I mean by my timing is on point!
The picture below is what the lesion looked like on my tongue.