Sometime in early 2008 I went to the dentist for a routine 6-month check-up. No big deal. My dentist was doing his oral cancer screen and saw something that he didn’t like. I was somewhat alarmed but didn’t think anything of it…until he referred me to an oral surgeon for a 2nd look. The oral surgeon took a biopsy, called me with the results, and said I need to get this looked at by yet another person. The biopsy didn’t show cancer, but tissue commonly referred to as “pre-cancerous”.
He referred me to an otolaryngologist (ear, nose, and throat doctor…or ENT) and I was introduced to Dr. Justin McNamar. I had no idea that this would be the first of many, MANY encounters with him.
We were both really confused about how/why this stuff decided to show up in my mouth. I don’t smoke, I don’t chew, and drink only in moderation. He said this sort of thing just doesn’t show up in patients like me. It was because of this that we needed to be aggressive with treatment to make sure we stopped it in its tracks before it turned into something more serious.
So, after a bit of poking and prodding and reading the results of the biopsy he determined that it was necessary to remove the bad tissue. Yikes. I go under the knife, he takes a chunk of my tongue (about the size of my thumb from the first knuckle to the tip), stitched me up, and sent me home. I don’t remember the recovery all that well but I recall it feeling like someone was stabbing my tongue with a white-hot knife. I don’t like to think about that too much so I’ll move on.
I saw Dr. McNamar about every 6 months or so after surgery just to make sure things were still looking good. The rest of 2008 and all of 2009 received excellent marks. Sweet!
Fast forward to the spring of 2010. I was brushing my teeth and for whatever reason I decided to take a peek at my tongue just to make sure things were still looking good. They weren’t. I saw some more spots.
I called Dr. McNamar’s office the next morning and scheduled an appointment. When he finished his exam, it was almost as though someone took all the air out of his balloon. He looked frustrated, confused, upset, and bummed. That made two of us. He took another biopsy and the results came back similar to the biopsy in 2008. Not cancer – but potentially heading down that road. We discussed some options which included enrolling me in a clinical trial for a topical medication that was being tested for this type of thing. I didn’t meet eligibility requirements for a couple reasons so that didn’t happen. As a result, another round of surgery. The end of this chapter was similar to the 2008 story so I’ll leave it at that.
My 6-month check-ups in 2010, 2011, and 2012 received 5 Star, A+ reviews. In fact, in September he decided that we could move to annual check-ups. Outta sight!!!
Hold the phone.
While we were on vacation in California in May of 2013, my mouth started to feel weird again. Something didn’t feel right. I decided to let it go for a while – maybe it was just a canker sore or something dumb like that. It didn’t get better. After a week and a half or so I took a peek in the mirror and knew immediately that something was wrong. I saw a new spot. It looked completely different than the 2008 and 2010 versions and was in a slightly different location. I was scared. Very scared.
I scheduled an appointment with Dr. McNamar for Friday June 14. I’m on record as saying that I had a bad feeling about this appointment. I asked Jenn to accompany me and I am so grateful that I did. He did a very thorough exam of my tongue. I could tell he did not like what he was seeing and feeling. I’d developed an incredible relationship with him and read his face like an open book. He sat down on his chair, expressed an enormous level of concern with what he saw, and then told me those words that I will never EVER forget:
“You have cancer.”
My mind started spinning out of control and I felt like one of the characters from Street Fighter was using my stomach as a speedbag. I think he just said I have cancer. That cannot be true…can it? This isn’t supposed to happen to a 30 year-old guy that doesn’t smoke, doesn’t chew, and was in arguably the best shape of his life, right? A thousand questions started flooding my mind. How did this happen? You know this just by LOOKING at it? What are the next steps? I know you are a smart doctor but there is a chance you could be wrong…right? Do I need chemo? Radiation? What do I tell my family? Am I going to die…..?
I have cancer.
He took another biopsy, ordered a chest X-ray and a CT scan and some blood work and sent us home. I called my parents that night and told them the news. Never in a thousand years did I think I would have to tell my parents this. As I was about to call my mom I asked Jenn, “Do you think if I Google ‘how to tell your parents you have cancer’ I’ll get any hits?”
It turns out the results from this latest biopsy came back as “suggestive but ultimately inconclusive.” Awesome. Let’s do another one! Unfortunately, these results confirmed what Dr. McNamar (and my gut) already knew.
I have cancer.
Dr. McNamar referred me to a head and neck surgeon at UW named Dr. Greg Hartig. I had an appointment with him between the 1st and 2nd biopsies and then again after the results of the 2nd biopsy and MRI were available.
I repeated the story above about a dozen times over the following week or so but the words didn’t really seem to sink in. That quickly changed during this 2nd appointment with Dr. Hartig. I’ll likely never forget sitting in that chair and staring at the monitor as we reviewed the MRI scan. The tumor was staring me right it the eyes. Talk about a reality check. This….just….got…real. I remember putting my face in my hands and I think I said something like “Oh man….” and Dr. Hartig put his hand on my shoulder, looked me in the eyes, and said, “You’re going to be okay. You’re going to be okay.”
We went over the next steps:
- Remove the tumor.
- Neck dissection to remove the lymph nodes to see if the cancer had spread.
- Take vascular tissue from my right forearm and some skin from that area and graft it to my tongue.
- 7 to 14-day recovery in the hospital.
- An additional 2 to 3-week recovery at home
- 30 days of daily radiation therapy
- 6 more weeks of recovery at home
At this point it was the fear of the unknown that scared me the most. I had no idea what to expect coming out of surgery. They told me I’d likely need a feeding tube from my nose to my stomach and it’s possible that I’ll need a temporary tube in my trachea depending on how swollen my mouth and throat are when Dr. Hartig and his team finished working. These things scared me. They scared me a lot. But I knew that I was going to be in the hands of incredibly talented and compassionate world-class doctors and nurses. The road to recovery was shaping up to be a bit long and rather bumpy but I knew I had it under control. After all, you don’t need to be dealt a good hand to take down the pot.
I had my surgery on July 8, 2013. I remember checking in, spending what felt like an eternity in the waiting room, getting called back to my room to get prepped for surgery, getting rolled into what looked like an operating room, meeting the team of nurses and doctors, and lasting about two seconds once the anesthesia started. Then the lights went out.
I woke up as they were moving me onto my bed and getting ready to roll me to the TLC, where I would spend the next couple days. I was visited by doctors and nurses every hour or so (sometimes more frequently) to make sure everything was okay. I will never EVER forget how slowly the time passed in this room. I would look at the clock, turn my head to get some rest for what felt like hours, only to see that the clock moved 5 minutes….5 lousy minutes. That went on for 2 days until I was ready to be moved into a regular recovery room. I spent about a week there while slowly starting to feel better. The pain was manageable, I started taking walks down the hallway, and Dr. Hartig gave me the green light to go home.
Home never felt so good.
I continued to recover thanks to a healthy diet of rest, relaxation, Netflix, and awful daytime TV. Dr. Hartig was very pleased with my progress at my post-op appointments. BUT – it was decision time. The margins of my tumor were 100% clean. All of my lymph nodes were negative. Radiation was no longer an automatic decision. He discussed my situation with his colleagues on the tumor board and they ultimately recommended going forward with radiation as a very prophylactic measure. Ugh.
A few weeks later I had a consult appointment with Dr. James Richardson, a radiation oncologist at Turville Bay. We went over the entire process, including risks, side effects, and recovery and I signed the release. I was fitted for my mask, a hard, plastic mesh covering my head and shoulders, that would be used to bolt me to the table to ensure they fired the radiation precisely where it needed to go.
One of the harshest acute side effects of the type and location radiation I received is the destruction of the healthy tissue in my mouth. This is positive because any cancerous cells were also destroyed but unfortunately the healthy tissue cannot be spared. Dr. Richardson warned me that my mouth and throat would likely be too sore and sensitive to eat and recommended getting a feeding tube inserted directly into my stomach through my abdomen. I refused at first, thinking “Come on dude. I’m young. You just told me the patients you usually treat for this type of thing are at least 20-30 years older than I am. I’ll be fine.” I threw my ego out the window and decided to get the feeding tube.
And I’m so glad I did.
The actual radiation treatments were completely painless. Each treatment lasted anywhere from 20-30 minutes each. I didn’t have any side effects after the first week. I knew they typically don’t show up until later in the treatment but I was cautiously optimistic. That only lasted until the end of the second week when taste started to disappear. Then after about three weeks I got a small tickle in my throat that wouldn’t go way. There was no amount of coughing, clearing my throat, or water that helped. Uh oh.
Uh oh was right. Things went downhill from there and they went downhill fast. The mucus that started to form in my mouth was so thick and so nasty that I would constantly gag on it. The soft tissue in my mouth was bright red, inflamed, swollen, and aggravated. It hurt to swallow. It hurt to talk. It hurt to sneeze. It hurt to sleep. It hurt to exist.
After about 3 or 4 weeks of treatment I had to start feeding myself through my tube. I poured 2-3 cans of liquid supplement into my tube 2-3 times/day. Feeling full after not going through the physical act of chewing and swallowing is such a mind ripper. But I did what I had to do and actually gained a couple pounds during treatment – something that rarely happens.
The side effects lasted another 4 weeks or so but they gradually went away. I started eating solid food again and once I could prove that I could take 100% of my daily calories by mouth I was able to get the feeding tube removed. Having that evil tube yanked out of my stomach was an enormous relief. It meant I was on my way to recovery.
I returned to work the Monday before Thanksgiving and life started to return to normal. Finally.
I still have some chronic side effects that may never go away. My salivary glands, particularly on the right side of my face, were thrown out of whack by the radiation. Dry mouth is a big problem but I just drink tons of water and chew a lot of sugarless gum. As you can imagine, having about one-third of your tongue removed impacts your speech as well as your ability to chew and swallow. Certain sounds are still very tricky for me to get out when talking but if I slow down and don’t get too excited I’ve been told you would never know I had a major surgery. Eating is still very challenging and probably always will be. I often joke that it takes me twice as long to eat since I only have half of a tongue – though there’s more truth than joke in that statement.
After ALL of that…
I’m happy to report that after 5 years of check-ups every 3 months I’ve been given a clean bill of health. And at my most recent appointment, Dr. McNamar said the words I’d been waiting to hear:
It’s been about 7 years since my last radiation treatment and about 2 years since I was told I was considered cured. There have been a couple VERY minor scares over the years. I noticed a tiny white spot on the other side of my tongue and decided to have it checked out. Dr. Hartig wasn’t concerned but did a biopsy out of an abundance of caution – and it came back fine. A few months later I noticed a relatively small light pink spot on my graft which showed up seemingly out of nowhere. I sent a quick note to Dr. Hartig and he told me it was likely nothing to worry about but would be happy to see me if it would give me some peace of mind. Knowing it absolutely would, I had him take a look. Everything was fine again. He was all but certain it’s just tissue granulation and nothing to worry about.
See, this is the worst thing about cancer. Not the surgery, not recovery #1, not the radiation, not recovery #2, not the side effects, not the scars. It’s the fact that everything can be 100% fine but you feel like someone’s constantly following you everywhere you go, just waiting to hit you in the back of the head with a baseball bat. I’ve become so hypersensitive and so hyperaware of every…single…little twinge, every little ache, and every little bump and wonder “is this it?” every time. But I guess that’s good since it means I’ll probably notice if something bad decides to show up and will get it checked out pronto.
I’ve been given NO reason to worry about this coming back nor have I been told that this means I have a higher risk for any other type of cancer showing up. I feel sorry for it if it does – because I’m not just going to roll over and fold.