“Damon, you must have a guardian angel. It’s a miracle that your cancer was caught so early. I wish all my patients were as proactive as you are.” Nancy (My Nurse Navigator)

A few years ago our church had a family camp in Wenatchee, Washington over the 4^th of July. My good friend, Kyle, was going so we decided to drag our across the mountains and hang out in the baking sun in the middle of the fairgrounds! We had an awesome time that year and discovered a few things that we loved. There is an incredible bike trail (The Apple Loop Trail) that goes around the Columbia River, through the desert, across bridges and into Walla Walla park along the Columbia River. AWESOME would be the understatement of the century. A 25 mile bike loop in the area where I grew up as a kid is soul food. We also discovered the best 4^th of July fireworks show in the park with the Wenatchee Valley Orchestra playing live.

Like many areas of my life, I knew I needed to build a routine around going to Wenatchee every 4^th of July. A “system” of rest and relaxation to fill my soul and bond with my family. The timing this year couldn’t have been better. I was able to start riding my bike again a few days earlier and my body and emotions needed to recover from the trauma associated with my surgery and a few weeks later the discovery that my treatment wasn’t over, it had in fact just begun.

As I write this I’ve just returned from a 4 night camping trip in Wenatchee. I feel rested and at peace. People at work asked me how I’m doing. “100%” I say. Truth is, I feel 110% right now. 110% even though I’m entering a season that promises to be painful. 110% because I proactively built a “system” into my life to recharge. Three long bike rides last week with a brief stop to spill my emotions out to God and experience that fear that creeps in when I allow myself to think of everything bad that will happen.

• What if this is my last bike ride here?
• What if the radiation leaves me with insufficient saliva to ride my bike?
• What if my neck is so stiff from the radiation that I can’t bend it during my bike ride?
• What if……

I apologize for being crude, but years ago a good friend and mentor confronted me when I was stuck in the “What if” loop. He looked me right in the eye when I was looking at all the potential negative outcomes. What if…, What if…, What if….

“Damon, what if monkeys fly out of my butt”. Yeah, it’s possible, anything is possible.

Point taken, Jeff. Thank you for the wake up call so many years ago.

My tears flowed for a few brief minutes and I flushed out the “what if’s” from inside. Something about a good cry that creates freedom. I jumped on my bike and for the rest of the weekend enjoyed my family. Boating and swimming in the ice cold water, ice cream, burgers, Cheeseburger Subs (dang, these are addicting!), boating on Lake Chelan, biking to fireworks with my kids, kayaking in the river, smores over the fire at night, and just hanging out with the people I love the most.

Thank you, Jesus that years ago I discovered the power of systems and began implementing them in my life. Thank you for the system of family vacations in areas we love. The system that came at exactly the right time to rejuvenate me in preparation for the impending radiation treatment.

I’ll talk a bit more about systems later on as I’ve realized over the past few days how critical my personal “systems” are to my long-term health and vitality, particularly after radiation.

Let’s rewind a few days and talk about the news I received as I was driving across the mountains on my way to the camping trip.

My phone rang just outside of Goldbar. I knew the number and was expecting the call, so I quickly answered it hoping that I wouldn’t lose cell signal.

“Damon, it’s Nancy, your nurse navigator. Is now a good time to talk?”. Immediately my heart started racing. I’d been expecting the call as the “cancer board” had met earlier in the day to discuss my case and I was waiting to hear if I needed chemo-therapy in addition to my radiation.

“Damon, I’ve got some really good news and I’ve got some not so good news” Nancy said.

Just a few days earlier I learned most of the details about my cancer and treatment from the radiation oncologist, but not all of.  Nancy was calling me to share the results of the cancer board discussion on whether or not I’d need chemotherapy.

Before I share the news from Nancy’s phone call it’s important to go back to the meeting with the radiation oncologist. For nearly 2 hours my wife and I sat in a very comfortable room talking about my cancer, the treatment, and the side effects.

I entered the room thinking that I’d lose my taste buds forever and lose all saliva production forever. I was confident in overcoming cancer but concerned about the side effects. I left the room elated to hear that food would only taste like cardboard for a few months after treatment. If everything works out, I’ll be able to taste the rolls and Turkey on Thanksgiving.

And I was elated to hear that my saliva production would only go down by 30%. Unfortunately, this would be a long-term effect of radiation.

Now the details. The cancer I have is known as Squamous Cell Carcinoma. I’m going to share some details of what she shared as best as I can remember, but please don’t interpret what I say below as fact. It is simply my recollection of what she shared.

Squamous Cell Carcinoma can be traced to HPV. That’s Human Papillomavirus Infection. Yes, the type that is transmitted through sexual activity and so much more. Today, HPV is considered an epidemic as 90-95% of adults are carrying HPV and most don’t even know it! The incidence of Squamous Cell Carcinoma is on the rise yet it isn’t understood why. All that is known is that HPV sometimes in some people mutates into cancer, Squamous Cell Cancer. Many times 20-30 years after the unknown onset of HPV. How did I get it? Who knows.

The radiologist proceeded to share that there are a few different strains of this carcinoma. The positive strain and the negative strain. The negative strain is difficult to treat and has around a 40% survival rate. The positive strain, however, is very treatable and has a 90%+ success rate.

Guess which one I have? The positive strain. WAHOO!!!! This cancer is the kind that is treatable! I’m elated to hear this news but quickly reminded of the same conversation in the same room six years earlier. My wife also had Squamous Cell Carcinoma and the oncologist stated that “it was the most treatable form of cancer on the planet”. After she was treated with chemo and radiation she was pronounced cancer free and we celebrated. Only to discover 5 years later that it had returned as a new instance of the same cancer that was “the most treatable form of cancer on the planet”. By the grace of God she’s been pronounced cancer free again, but she reminds me often that she is always wondering if it will come back again.

So my cancer is very treatable. That’s the good news. The bad news is that they were unable to find the source of the cancer. My cancer appeared in my lymph node but this type of cancer doesn’t start in the lymph node. It starts somewhere in the head and neck region. Most of the time they are able to identify the source of the cancer and treat it directly.

Most of the time. The source of my cancer was not discovered which only happens 5-10% of the time. So, the data for treatment of a cancer where the source is unknown is sparse.

“We’re going to treat it with radiation. A general dose of radiation in your head and neck area every day for 6 weeks. Fortunately, because you caught it so early we don’t have to have a high dose of radiation we can use a lower dose, but if all goes well you’ll be cancer free and the long term outcome is very very good.”

How painful will it be I asked?

“Your wife’s cancer treatment was the most painful. Yours is right next to it as the most painful form of cancer treatment because of the location in your tongue and throat. The next 3 months are going to be challenging for you.”

I smiled and said “bring it on”.

It’s very treatable, we caught it early, and there are only a few side effects-30% saliva loss, short term taste bud loss, stiffening of my neck, and potentially turkey neck. Finally, she reminded me that I’d want to see a dentist quickly. My bones will be degraded in my head and neck. A tooth extraction after radiation could result in bone rot because it might never heal (I wasn’t concerned about this one because I haven’t had a cavity in years….).

“Damon, I want to bring your case to the cancer board on Wednesday. I want to get everyone’s opinion to make sure that your treatment plan is vetted with everyone. The recommended procedure is either do nothing or radiate. Because we don’t know the source, my recommendation will be to radiate and potentially chemo. We’ll talk on Wednesday and let you know!.”

I can do this I told my wife as we walked out high fiving each other at the great news, excited but anxious about the outcome of the cancer review board on Wednesday.

Wednesday arrived and I got the call I was talking about earlier from Nancy.

“Did they review my case?”

“Oh yeah, they reviewed your case. They spent a lot of time talking about you. The best cancer doctors were there and they talked and talked and talked and reached a consensus about your treatment.”

“And”….

“You were proactive and caught this very early. This is great news. You caught it so early that nobody knows the original source of the cancer. Recall cancer doesn’t start in the lymph nodes, it starts somewhere in your head and neck area. Our most senior doctors (he’ll be your primary oncologist long term) was pretty emphatic that the cancer originated in your tongue and it was simply too early to detect it. All of the oncologists believed that radiating the nasal passages would cause more harm than good so you won’t have to have this treatment. Furthermore, chemotherapy will not be necessary!”

“Wait, let me make sure I understand what you are saying. I won’t need chemotherapy. This is great news. And did I hear you say that I won’t need radiation?”

“No, that’s not exactly true. You won’t need radiation of the nasal passages but you will need radiation in your tongue and throat.”

“Ahh, got it. This is great news (even though I didn’t know it was a possibility that I might need radiation in the nasal area).”

“How did you find this, Damon”

“I had a lump. I was suspicious and went to my primary care physician. He wasn’t worried and gave me Vitamin C and asked me to take it for a week. If the swelling of the lump didn’t go down, to follow-up with a phone call. I scheduled an appointment for the following week. The lump hadn’t gone down. He still wasn’t concerned but prescribed a CAT scan “just to put ME at ease”. A week later, the results of the CAT scan were negative. He referred me to an Ear Nose and Throat specialist. She felt the lump and wasn’t concerned. However, when I shared that my sister had cancer in this area she said she wanted to be “safe” and have it biopsied under ultrasound to ensure no false negatives.”

“A week later it was biopsied and a week after that I got a call from her stating she was shocked, but it was cancer.”

“Wow. Thanks for sharing that story Damon. Now that I have the entire history I want to remind you of how fortunate you are. This cancer is treatable and because you caught it so early it will be eliminated from your body. I’m not sure if you realized it, but the cancer is so early that you are fortunate that the biopsy caught it. There are a lot of cases where cancer is present and a biopsy doesn’t catch it.”

“Damon, you must have a guardian angel. It’s a miracle that your cancer was caught so early. I wish all my patients were as proactive as you are.” Nancy said.

We finished the call by setting a follow-up appointment with the medical oncologist. Furthermore, I shared with her that my friend Ted who has undergone 3 rounds of cancer treatment recommended that I be proactive and get a feeding tube implanted so that if I can’t eat my body will still have nourishment and we won’t be reacting to get it nourishment. She agreed and promised to become my “advocate” behind the scenes to make this happen.

Lord, thank you for watching over me. Thank you that I felt the lump early. Thank you that I pushed through the argument in my head to not take the time off work and get it checked. Thank you that I didn’t listen to the primary care physician and became my own advocate to know about my lump. Thank you that he followed through, realized I needed a specialist, and sent me to her. Thank you that my sister went before me and her cancer inspired me to always have lumps checked. Thank you that the resultant biopsy came back positive when it could have easily been a false negative. Thank you that I was able to have the surgery and today I’m 110% recovered after only 3 weeks. Thank you that the radiologist spent the time with me and my wife and that the doses can be moderate because it was so early. Thank you that I had the blessing of having my case thoroughly reviewed with the cancer board and there were many experts in that room. Thank you for my “Ted talks” where I can learn and be inspired by a friend and man of great faith who has walked this road multiple times before. Thank you for his example of faith in the midst of his own cancer treatment and how it is inspiring my faith and desire to inspire others through my writing and example. Thank you for the rest I received over the weekend. Thank you for my job, my boss, my benefits, my health, my family, my friends, my faith, my church, and the gift of eternal optimism and positivity in the midst of this storm. Thank you in advance that this cancer will be eradicated from my body for eternity and that I will have a story that will bring you glory.

Just one more major hurdle before getting the treatment started! My dentist appointment to learn the long term impact on my oral health from the radiation…..