In late 2008 I took notice of a sore on my tongue. At first it seemed like a normal canker sore and so I didn't give it much of a thought. I had experienced similar sores before and they normally resolved in a few weeks. In fact, I was so naive and foolish that I didn't pay any attention to it for nearly 6 months. I guess when you're 26 you still have a bit of that young man's invincibility syndrome. The pain had gotten so bad, in fact, that I was taking Ibuprofen nonstop just to manage the pain enough to be able to eat, but still hadn't sought medical advice. Having finally had enough of my constant whining, my wife Rebekah scheduled an appointment for me to have the dentist check it out.
It didn't take long for the dentist to observe the ulcer that had been plaguing my tongue for months and inform me that it was beyond his scope of practice. He would be referring me to an oral surgeon to have it more appropriately screened. Even at this point, I was still amazingly nonchalant about it and figured there would be a completely logical explanation that would clear it up in no time. I sat down in the surgeon's chair and he took a long look in my mouth. He kept asking questions about my smoking history. I told him that I didn't have any. Chewing tobacco use? Nope. He told me that a biopsy would need to be done so they could determine what was going on. He removed a small piece of the ulcer from my tongue that day and sent it off to the University of Washington to be tested. Sitting back at his office a couple of days later the terms seemed to just bounce around in my head as he rattled them off. "Tumor"..."malignant"..."surgery"..."radiation"..."chemotherapy"..."life expectancy". It was all a blur. None of it made any sense. Worst of all I had to go home and tell me wife that her husband of less than 3 years had cancer.
We can skip stating the obvious. Tears were shed. Questions that we didn't have the answers to were asked. Considering a completely uncertain future was constantly undertaken. I was referred to an Ottolaryngologist named Stephan Bayles at Virginia Mason in Seattle to consult with regarding the surgical options moving forward. He was compassionate and empathetic. He gave us assurance that he would do everything he could to get the tumor out of me so life could return to "normal" as soon as possible. I was scheduled for surgery a few days later.
After the procedure I was sent home the following day with a sore mouth and hope that things would be alright. It hadn't been so bad, after all. A piece of my tongue the size of a marble had been removed. The recovery time appeared short and I had seemingly dodged a bullet.
The following day the phone call came. The margins of the part of my tongue they had removed were not clear; meaning they had not gotten all of the malignant cells out of my body. Furthermore, there were several positive lymph nodes from the ones that had been resected from my neck. This meant that there was a chance that cancer cells were now moving throughout my body via the lymphatic system, leaving pretty much my entire body at risk for a secondary malignancy. It wasn't over. I wasn't in the clear. In fact, what I had been through up to this point was just the tip of the ice berg.
The following week I endured a hemiglossectomy with radial forearm flap, as well as partial neck dissection. Basically, 30% of my tongue was removed and the tissue was replaced with muscle from my left forearm to aid in my speech and ability to eat. Several weeks later I was sticking my head in what amounts to a giant microwave 5 days a week. Every Friday I was given an infusion of Cisplatin (a powerful chemotherapy drug) and a cocktail of anti-nausea medications to try and keep the persistent vomiting at bay (they didn't work). To say that life was miserable during this time would be just about the most obscene understatement you could make. Not only on my part, but also that of my wife. She had quickly become the mother of not just one child, but of two (me being the second) On top of working full time she had to constantly keep on top of making sure I got to my appointments and ensuring that I had all of the proper medications and supplies to care for my healing wounds. She was unbelievably strong. She did no skip a beat even though I knew her life had come crashing down around her. There is no way for me to put into words what she did for me and our family.
6 weeks later my treatments had been completed and I was sent on my way. A follow up PET scan showed no sign of disease! After some extensive physical therapy and encouragement from my wife I was back to eating, drinking, and speaking (more or less) normally. Life could finally get back on track. We could finally leave all of this nonsense behind us and move on.
Fast forward 7 years. Since my bout with cancer I had come back to work as a firefighter. Our family had added 2 new members (our son Aiden, and daughter Riley). Things were great. Life had returned to normal. But that was not the end of my cancer journey. I had developed a new sore on my tongue near my throat. The symptoms were eerily familiar. It didn't take a doctors diagnosis to tell me what I already knew. It was back. It was worse than the first time. More surgeries, radiation and chemotherapy were on the menu. It was hell.
That was February 2016.
The surgery this time was far more extensive than the original. I can't say for certain, but I think it's safe to say I have around 40% of my original tongue left. My right forearm had been the donor site this time for the tissue to replace the resected portion. Because of the positioning of the tumor this time, it was necessary to split my jaw completely down the middle to gain access. Because of this complication, the resulting range of motion of my jaw was considerably diminished. Eating solid food was simply a dream. Using a feeding tube for the rest of my life was quickly becoming a reality. Chronic pain in my jaw joints was the name of the game. There were times when my return as a firefighter seemed to be slipping through my fingers. Making lemonade out of this pile of lemons seemed impossible. But, with the help and support of my family, friends and brothers and sisters in the fire service I was able to climb back from the edge of complete collapse. While this disease had taken so much from me, the sheer volume of support that I had received through it all was what was really overwhelming. Not once had I been forced to worry about a paycheck. The guys and gals at my department had generously donated their vacation time to me to ensure that I never missed an hour of pay. Not only that, but because of a gofundme account set up for our family, many of the medical bills that rolled in (seemingly nonstop) were taken care of by the kindness of others. Kind words, prayers, and constant encouragement kept us going through the darkest of times. I can honestly say that I can look back on that time in my life and don't for a minute feel sorry for myself, but rather overwhelmingly blessed by the people in my life.
Well, you've read this far...might as well pull off the bandaid now and give some context to the title of this post. About 10 days ago I had some nagging pain in my neck, below my left ear. It felt, at the time, like I had strained a muscle. So I treated it diligently with heat and anti-inflammatories. You can see where I'm going with this. The pain continued to increase and was unaffected by any interventions that I could come up with. On Wednesday, November 29th I had Rebekah take me to the ER. The pain was so severe that I didn't even think I could wait for an appointment with my primary care physician later that afternoon. The ER physician said that it sounded like a pulled muscle, but that he would order a CT scan to confirm that there weren't any abnormalities. An approximately 2cm mass was found in my neck at the location of my pain. Secondly, there was another abnormality found in my right lung. Because the CT wasn't focusing on my chest it was unclear if it was another tumor like mass, or just inflammation. Today I met with Dr. Bayles. The same Dr. Bayles that has been with me through this entire shit storm. I knew when he came over and gave me a hug that things were less than awesome. This mass is "worrisome". Not even worth a biopsy...it's clear what is happening here. The abnormality in my lung though, needs some better imaging in order to make an informed decision.
Next Wednesday morning, December 6th I will have a PET scan at Virginia Mason. The results of this imaging will determine what happens next but O.R. time has been booked for that afternoon to provide Dr. Bayles with that option if it is indeed the course we need to take. If it isn't, there are some extremely promising immunotherapy drugs that have just become available in recent years that might also be considered. Either way you slice it though (see what I did there) we're looking at another tough battle ahead of us. More uncertainty. More heartache.
If I can find one sliver of hope in this constant barrage of torment, it's that I have, unequivocally, the best support system that one could ever wish for. I can hold my head high knowing that my family will have the support they need to endure this coming battle. I can find peace in the knowledge that you amazing people have my back. It will be said here, and many times to come...but THANK YOU for your support. It does not go unnoticed and it is appreciated beyond your comprehension.
Rebekah and I will continue to use this page to update anyone interested in what is happening and how things are going with my journey. Please keep us in your prayers.
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