My Journey with cancer all began “officially” on November 9th, 2017. Of course it had started months prior to that official date, unbeknownst to myself.
I am a very active person and one of my favorite things to do is Brazilian Jiu Jitsu. One night, on September 11th, while training here in Medicine Lodge, I got struck in the cheek. My training partner was attempting to take my back and came around and hit me in the face. This was an accident, of course and just one of the things that you just expect to happen in a sport like that. Things like that are exactly why we wear mouth guards, after all. I knew immediately that it had cut my inner cheek, so I did what most MEN would do…. I was going to let it heal naturally.
At this point in my story it is the end of September, and I have been dealing with this cut for a couple weeks. I finally began talking to my wife about it and she wanted me to get checked out. As fate would have it, I had recently changed jobs and while I had insurance coverage at this point, there had been a snafu and I didn’t have my card, nor was I very sure exactly how good this new insurance was going to be. I was busy and it was going to be kind of a pain, so I toughed it out and continued on. All the while I am still training Jiu Jitsu. My training partners are aware of the injury and began urging me to see the dr aswell.
Toward the end of October, the insurance was a non-issue, things had slowed down a bit, and was READY to go to the doctor to get this thing dealt with. My first visit was with a doctor at our local hospital who referred me to an Ear Nose and Throat specialist in Wichita. He didn’t think that there was any reason to be concerned, but “better safe than sorry”. The fact that I was now being referred to a “specialist” made me put it off yet a little longer. Shortly after the first of November, I finally gave in and called the specialist to schedule my appointment. The date for this appointment was set up for November 9th. To this point CANCER had never been mentioned, thought of, or insinuated. There was no reason for this to have even crossed my mind at this point. After all I have never smoked, never chewed, and am a very light drinker. I just didn’t have any of the risk factors associated with cancer.
The day of my appointment with the Ear Nose and Throat specialist arrived; he had a look in my mouth and then immediately asked if his colleagues could come and get a look too, I began to get a little worried. At this point I really just wanted this guy to sew my mouth up and let me be on my way. They all left the room and came back to tell me that while they had NO reason to believe that it was cancer, they would like to take a biopsy of it just the same. Let me just say that the biopsy was just as painful as it sounds.
I left that appointment thinking one thing….”HOW CAN I HAVE CANCER!?” It wasn’t official yet but the drive home alone from Wichita was difficult. My mouth hurt even more than it had been before and the word CANCER was now swirling around in my head. I made it and I called all of the people that I NEEDED to during that initial drive home from Wichita. My wife was first of course, and then my Mom and Dad. They all were my rock through this: from day one they had me. But not just my actual family but my Jiu Jitsu family. My training partners held me up in an extremely difficult time. Continued to push me to train when I felt good enough. They pushed me and kept me positive. Pake McNally is my instructor, and my other main training partner Ryan Cope.
Of course the results of a biopsy aren’t instant, and even though it was just a few days the wait was agonizing. I called the next day and the next and the next….I couldn’t stand it. I knew that it was negative – it HAD to be – I just needed to hear it.
On November 13th at 3:30 in the afternoon I got THE call. I was at work and so I went to my pickup and took the call. The doctor then proceeded to explain that the results came back positive for cancer, but that he truly believed that it was a type of cancer that is caused by a strain of HPV. Getting a positive result for a STD isn’t something that anyone wants typically, but the doctor explained that it would explain why I had cancer, and if it was derived from that it would be much easier to treat, so we hoped for a positive STD test result. Another round of waiting for results, and of course it would also take a couple days to get them back. Fast forward three more days of waiting and multiple calls to inquire about the status of my test, I finally got THE call – 2.0. They told me that they had figured out the strain of cancer and it was not derived from a STD, it was in fact: Squamous Cell Carcinoma, which is essentially a strain of skin cancer.
So it begins in earnest. The ENT referred me to an oral surgeon in the Wichita area for the following week. When we arrived to this appointment, he took one look inside my mouth and immediately told me that my options were limited. He informed me that “it” had attached to the muscle inside my cheek and that “it” was no longer anything that he could remove. This was getting more complicated because “it” was going to be something that a team of surgeons would be required to take care of. And not just any team of surgeons: a special team of surgeons – one of only two such teams in the United States that are able to perform this type of surgery. One of these teams being in Kansas City at KU Cancer Center and the other being in Houston. Logistically, the choice was obvious: we were going to Kansas City.
When we met with the surgeon and his fellow, they explained that they would have to remove the mass and then place a flap of my own grafted skin and tissue over that area within my cheek. They would take the main tissue graft that would go inside my cheek from my arm, and then place a very thin skin graft from my thigh over the area on my arm and then put the arm in a cast for the duration of the time I would be in the hospital. They talked about breathing tubes and feeding tubes and recovery time. It all seemed crazy and surreal to me. At this point I had to give in and quit training. As much as I wanted to be there I couldn’t stand the pain.
After our initial meeting with the surgeon at KU Med in Kansas City and the CT scan, PET scan, and all of the blood draws – they set my date for surgery: December 15. When the day came I was in a lot of constant pain, eating was quite difficult at that point, and I was SO ready to be DONE.
Little did I know that I was a VERY long way from being DONE. The days in the hospital were a blur for me. My amazing wife stayed by me nearly every hour I was there. I had a feeding tube. I couldn’t speak due to the breathing tube. The experience goes beyond being surreal. My arm was in a cast and I had NO idea what was underneath it. I found out later that it was slightly more extreme than I had initially imagined. After 7 days in the hospital I was released to go home on the 22nd of December.
Just in time for Christmas.
The trip home from KC to Kiowa was slightly less than desirable and quite nerve-wracking for everyone involved, but we got it done. At that point I was eating thru a feeding tube every 3 hours and couldn’t do or say a lot. The healing process throughout this whole thing was unbelievable. I gradually got stronger through the support of my family and friends. Also my amazing community lifted me up in their arms more times than I could count. The outpouring of messages that I got from the BJJ community was insane. Gyms from all over the state sent donations and most importantly an amazing amount of encouragement.
In the days to follow there were lots of visits from friends and there were a lot of Disney movies watched in our household. I slept the days away just trying to heal. When the day came that they told me I could finally have food again I was beyond thrilled. That feeling only lasted so long though. As I started my radiation treatments at the end of January. 5 days per week for 6 weeks – 30 sessions all together. I just wanted to be back in the gym. Feeling normal and doing the things that would help me feel that way.
I was driven to Wichita by an army of volunteers that I couldn’t even begin to name off of the top of my head. Some of you are here tonight. I remained strong and fought through the nasty radiation and FINALLY at the end, the side effects really got to me.
I couldn’t drink water or eat food. I was back to using a feeding tube which I SWORE would NEVER happen again. I kept telling myself that once the radiation was over I was finally going to be DONE and could get on with my life… as I keep finding out during this process: that just simply isn’t the case.
I have come leaps and bounds from where I was 6 months ago. But I still have a very long way to go. As of my latest appointment with my surgeon I am told that I am cancer free, my mouth is healing well, and that things will be improving but that I should also expect that sometimes things aren’t going to be so good.
I am back to working full time as a GM technician in Kiowa, and back to training Jiu Jitsu. I competed in a tournament in April. Yes I actually competed in a competition with guys that had been training for years and are healthy individuals. It was something I had to do to make myself feel more like me again.
After this experience rediscovering what NORMAL is has been a difficult endeavor. I don’t feel like the same person I was a year ago. I know that mentally I’m not the same person, or at least I hope that I’m not. This journey is one that I never imagined myself to be on. I was and still am beyond thankful for all of the support that I received. All of the survivors that stepped up and called me to just let me know that I wasn’t alone, I was continually surrounded by a group of people that understood what I was going through.
My battle is not over… this journey is really only just beginning for me. I will continue to heal and grow as a person and develop a NEW and hopefully a better – certainly different – normal.
UPDATE:As of January 2019 I am cancer free. I am set to get scans every 6 months. I have gone through many many more Drs Appointments. I have gone through speech therapy. I have been diagnosed with Trismus also known as LockJaw. This is something that I will battle my entire life. It will effect the way I eat and drink. It will effect the way I talk. I currently can only open my mouth up a 1/2″ at the very most. Most of the time its closer to 1/4” I stretch daily and struggle but stay positive and keep moving forward. You can’t let a diagnosis define you. The power of positivity is definitely real. In September of 2018 I competed in a tap out cancer tournament. It was an amazing experience. The Tap Cancer out Foundation raises money To cure Juvenile cancer. I would urge anyone out there to look into their tournaments. My Next and Last tournament was last June in Wichita Kansas. I got 3rd place and competed stronger than ever before. I feel good and Jiu Jitsu is what I believe to be the primary reason for that. When things are off Jiu Jitsu is there.