8/27/2019
Emotion-The gap between expectation and experience

A little more than 3 weeks ago I woke up from surgery and my first question was “did you get it”. “We got it” the surgeon answered. Of course, I was incoherent, fell back asleep and when I woke again my first question was “did you get it?”. “We got it” the surgeon answered. This time I remained awake.

They got it! They were able to visually see the cancer as a small lump in the right-hand side of my tongue, took a quick biopsy and high-fived each other after it showed positive. The TORS robot guided by the surgeon’s hands removed portions of the right-hand side of my tongue, and successfully removed all the cancer. The pathology would later show that the tumor was just 12 millimeters in size and was only 5 millimeters from the “blind” biopsy that was performed on my tongue just 6 weeks earlier.

Barely 12 hours after the surgery my emotions were at a peak. I was elated and filled with energy because of the results. I pulled up my phone and I shared an emotion filled Facebook Live broadcast sharing the news. I exuberantly declared that it was a miracle. A few short minutes later I typed the previous chapter of this book.

A few short weeks later my emotions of elation quickly changed to confusion, anger and frustration after my follow-up visit with the doctor and radiation oncologist.

Before I share the results of the visit I want to share a story that will help bring some clarity.

As a kid I loved to fish. I remember walking miles to toss my line in the water in hopes that I’d land a fish. I remember going Salmon fishing in the ocean and catching a few of those monsters. I remember going fishing with Monica when she was a kid and watching her bring in fish after fish after fish while others just watched. I wrote a blog about it years ago. It’s true, fishing creates memories that last a lifetime.

Last year was Nathan’s 10^th birthday. I knew I wanted to start doing “man things” with him but I didn’t know what to do. To make a long story short, we went fishing in Canada with a man who has become one of my closer friends. The trip was incredible. I’ll never forget the smile on Nathan’s face when we landed the first king. His primal yelp expressed how elated he was with the king salmon he successfully netted. You might say he was excited to net that fish as I was to discover that my cancer had been successfully removed.

Emotion=Expectation minus Experience

Our emotions were high because the experience of catching and netting the king salmon exceeded any expectation he’d had. Prior to this trip the largest fish he’d caught was only a few pounds, so subconsciously his expectation was “a little bigger than the trout we’d caught”. His experience of catching and successfully netting a king salmon that weighed over 18 pounds dramatically exceeded his experience so his emotions were very high invoking the primal yelp!

After that trip I decided that this trip to Canada with my son would be an annual occasion. The memories we build together are memories that I will cherish for the rest of my life. Unfortunately, the trip this year overlapped with my planned radiation treatment and I was afraid I’d have to cancel it. However, with the discovery of TORS and the surgery I wouldn’t be in the middle of radiation treatment. In fact, I’d be 10 days from my surgery and recovered enough to fish! That’s what I decided.

We left the house early Wednesday morning and picked up my father in-law. We had a great trip and caught a lot of salmon (3 kings each plus a couple of coho). The limit for kings is 4 per person and we wanted to limit out, so Nathan and I decided to go out Saturday afternoon before out scheduled departure on Sunday. Grandpa was tired so he stayed back.

That morning we were fishing, and I noticed a lot of the other boats catching fish but we failed to get even a hit. As I watched them net the fish a little closer I noticed something that I hadn’t seen before. The people catching the fish were locals, and they knew the tricks to catching salmon there. As I looked a little closer, I noticed that the leader on their poles was at least twice as long as the leader we were using, and nearly twice as long as the leader recommended by the manufacturer of the flashers we used to catch fish.

I asked the camp host (who fishes every morning and catches a ton of fish) if my observation was correct. “Absolutely” he said. I was confused. I asked him to show me his fishing set-up. I was always told to use 30″ of leader by virtually everyone that travelled to fish in Canada, but I stared at his pole with 72″ of leader. He was even using the same lures that I was using. The only difference was the leader length.

I was convinced and I asked him if he had any extra leader. He pulled out the 25# test and cut me off 2 pieces that were 75″ long leaving me enough leader to tie the knots.

“Where should I go” I asked him. He pointed to a spot barely 5 minutes from camp.

“Are you sure? I have fished for hours there and I’ve been skunked.” I asked.

“Absolutely. I catch a ton of fish with this set-up over there.”

I decided to trust him. He was the expert and he had proof that his technique and his location were landing fish.

We drove across the water and rigged both poles with the longer leader and dropped them to the exact depth he’d recommended.

Truth be told, I didn’t exect that we’d catch any fish, but I relished the time on the boat with my son. He’s become quite a fisherman and an expert netter, netting a lot of fish that would have been lost if not for his skills. In 2 years of fishing for kings he’d only lost 1 fish!

A few minutes after dropping our lines I yelled “Fish!”.

I quickly reeled this king in, he was easily the biggest fish I’d hooked since fishing up here. As the fish got closer to the boat I told Nathan to grab the net. I saw the fish surface and with a smile knew we’d bring him in the boat.

I was mistaken. The king turned his head and “spit the hook”. Fish gone.

Our hearts were racing, we were both excited and saddened. “We’ll get the next one” I shared with my son who was feeling a bit dejected because he wasn’t able to net the fish.

A few minutes later another fish was on. As I reeled this fish in, I told Nathan “We’ll get him”. A few short minutes later this fish also spit the hook and we lost him.

“It’s ok” I told Nathan, my heart thumping out of my chest. He let out a primal yelp, but this time it was a yelp of anger.

Emotion=Expectation minus Experience

Our experience over the last 2 years that almost every fish we hooked we netted and brought into the boat. Our experience now was that we lost 2 in a row (this had never happened). Our emotions were high because our experience of netting fish was significantly lower than our expectation.

We dropped the line in again. Our hearts were racing as we knew this new technique of longer leader was working. We were hooking fish while all the other boats watched, wondering what was different.

A few minutes later, another fish on. A few minutes after that, another fish lost. A few minutes later, yet another fish on and another fish lost at the boat.

Emotions increased as the excitement of hooking fish exceeded any experience we’d had before (4 fish in less than 20 minutes!). Emotions decreased as we were unsuccessful at netting the fish.

We took a pause. A friend boated by and asked if we were using a single hook. “Yes” I responded. “Put a triple hook on, it will ensure they stay hooked”.

I took a few minutes, modified our lures and dropped them in.

A few minutes later I watched the line pulling from the reel. This fish was HUGE. “We’re going to get him, Nathan. I’m going to play him out and wear him out.” I wore him out. He came to the edge of the boat and we saw him. Easily the biggest fish I’d seen, I’m guessing 25 to 30 pounds.

“Get ready” I told Nathan. The fish ran a little under the boat and I reeled him back up. Nathan started to net him and I said “not yet, he’s not tired, we’ll get him”.

The fish ran to the back of the boat and got tangled in the cable of the downrigger that had broken earlier in the week. A second later, the line came loose. Our monster king was lost.

I slammed my fist into the seat of the boat and watched my son wail in tears. He took responsibility for losing these fish and was crushed.

I placed him on my lap and hugged him as he cried and cried and cried. “We had him dad, it’s my fault”.

I gently looked him in the eye and re-assured him that it wasn’t his fault. We’d learned a new technique of fishing that more than doubled the leader length. Our net wasn’t long enough to scoop the fish and as a result, when we got the fish to the boat he wasn’t able to get the net low enough to bring the fish in like he had earlier.

Emotion=Expectation minus Experience

My son’s tears indicated the magnitude of his emotions. His expectation was that he’d net those fish but his experience was that we lost 5 in a row.

He looked up from his tears at the flasher on the pole where we’d lost that fish. “Dad, the leader knot failed!” He was right, it was a failure of the leader knot. The failure was mine, I’d tied the knot and it failed. “It’s my fault son. You did great.”

That was the last fish we hooked on the trip. I dreamed about hooking fish that night and everyday I see friends post pictures of fish they caught brings up the emotion of losing those fish, but I’ll never forget the lessons my son and I learned during those 45 minutes of fishing and hooking 5 fish and later losing them. And I had no clue that those same lessons would guide my decisions over the coming week to help me fight cancer.
Lesson #1:
Emotion=Expectation-Experience. We were ecstatic with hearts racing after hooking 5 fish in 45 minutes. Our experience exceeded any expectation we had. We were deflated and discouraged after losing all 5 fish because we’d only lost a few fish in the prior years. Our experience was less than our expectation.
Lesson #2:

Ask an expert-If you want to catch fish when others aren’t, ask an expert who has experience catching fish. When we asked the expert he told us to increase the length of our leader, a counter-intuitive action that was supported with data (lots of fish). We hooked 5 fish in 45 minutes because we listened to the advice of the expert.
Lesson #3:

Different techniques require different equipment-Our net handle was 4 feet long, our leader was 6 feet long making it virtually impossible for an 11 year old boy to net the fish. If we want to catch the fish we need to get a different net.
Lesson #4:

Emotional experiences bind us closer with those we love-I’ll never forget holding my son as tears streamed from our eyes. Our fishing trips and this experience in particular have built a bond that will last forever.
Lesson #5:

Little details have a huge impact-I was negligent with the knot I tied that ultimately failed resulting in losing the fish. If I’d re-done the knot when I noticed it was fragile we would have caught the fish. Instead, we lost it.

Now let’s get back to my cancer story.

The surgeon tried multiple times to reach me while in Canada but was unsuccessful. Unfortunately, he was on vacation during my follow-up appointment last Monday (the day after returning from fishing). His nurse practitioner shared the results of the pathology with me.

“Great news! Your pathology came back and they removed all the cancer with clear margins!”.

I was elated, but it only lasted a brief moment.

“Unfortunately, the pathology shows that the type of cancer is different than the cancer they found in your lymph nodes. It’s HPV negative.

“Unfortunately, the surgeon is on vacation and I don’t know what it means” the surgeon’s assistant shared.

Ouch. These words pierced my soul like a sharp sword. HPV positive is “very treatable”. HPV negative is “not as treatable”. HPV negative might indicate that they did NOT find the primary source of my cancer as I’d hoped and believed prior to this visit.

My mind raced. I couldn’t fully celebrate the removal of the cancer because of the uncertainty associated with the pathology result.

Emotion=Expectation minus experience. My expectation was that I’d hear that it was found, removed, and that I was cancer free. My experience was that they’d found and removed cancer, but it might not be the primary source of my cancer. It might be ANOTHER cancer. I experienced emotions of sadness, grief, confusion and frustration.

Maybe I’ll get some answers in a few hours I thought, after my visit with the radiologist.

Once again, I was mistaken.

My expectation going into the radiologist was that I’d hear that my radiation treatment would be significantly reduced because they found the source. I was mistaken. The radiation treatment would be very similar to the original treatment plan, but a little more targeted to the side of my tongue where the cancer was found.

I couldn’t hide my frustration. “This makes no sense! My surgeon said my treatment would be dramatically different and my quality of life would be significantly better. You’re telling me something different.”

“He’s the surgeon. He shouldn’t be giving radiation advice.”

I became infuriated. “With all due respect, I am uncomfortable with your recommendation” I stated.

“I understand” she stated. Followed by the statement “Unfortunately, there are a lot of different camps on how to treat this cancer.”

I then asked her about the HPV negative pathology result. “It makes no sense to me, either” she responded.

I left her office angrier and more frustrated than I’ve been in years. My experience with the radiologist was dramatically different than the expectation I had from the surgeon, and my emotions were raging because of it.

I vented on my wife for a while, then I called a friend and vented.

I needed to take action. When I wasn’t catching fish in Canada, I asked the expert who was catching tons of fish, and because of this I started hooking a lot of fish. I immediately scheduled an appointment with an expert, the radiologist at the University of Washington who specializes in head and neck cancer, particularly individuals who had TORS. My appointment would be a week later.

When I returned to work people asked how I was doing. Unfortunately, I couldn’t say “great” because of the newly discovered uncertainty.

I received the phone call Friday right before I went home. It was the UW.

“We just got the pathology results back from the re-screening of your tumor. They made a mistake. The tumor that was removed from your tongue was also HPV positive.”

Wahoo! I high fived my son who was with me at work and my co-worker. I didn’t expect the call and the experience of the call exceeded any expectations I had. I was elated!

I just returned from my radiology appointment at the UW this morning. Much like the expert taught me how to catch fish, this expert revealed how to effectively treat head and neck cancer and dramatically improve my quality of life because the tumor was found and removed.

“I have one burning question” I asked the radiologist. “Is your treatment plan different because they found the cancer?”

He chuckled “Of course it is!” I asked him to explain.

“When you have a rat in a barn you don’t burn the whole barn down to kill the rat. You find where the rat lives and you target that specific area to kill it. Because we know exactly where your cancer was we will target our treatment. Your quality of life will definitely be better because we located the cancer.”

I let out a sigh of relief. His answer was consistent with the surgeon’s answer. Much like the expert in Canada told me how to fish (and it was different than the people who only fish once a year) the experts in head and neck cancer told me exactly how to treat this cancer (and it was different than the radiologist who occasionally treat head and neck cancer).

He explained that my treatment would be a very light dose on the left side of my neck, a little higher dose on the right side and a targeted dose around the right base of my tongue where the cancer was removed.

“This is very specialized treatment” he said. “It’s important that you get treated by a specialist because patients who get similar treatment in non-specialized clinics drop out about 33% of the time.”

“Why is that” I asked.

“Because the level of care isn’t available. The pain levels become intolerable and they quit. We have a lot of capabilities here that non-specialized clinics don’t necessarily offer, and our treatment is very refined so we minimize the amount of pain that is induced from the radiation treatment.”

Much like my lesson from the failed knot in Canada, the little details make a big difference. This radiologist specializes in treating this specific type of cancer and because of this he “catches a lot more fish (e.g. people finish their treatment and as a result survival rates are higher.)

“What are the long-term effects from this treatment” I asked?

• Your pain will be the same or greater than you just experienced starting at week 3 and peaking near the end of treatment. It will taper off 1-2 months after treatment.
• You’ll have saliva loss. At 6 months it will be about 70%. Long term it will be 80%-90% returned. You’ll barely notice it, but might have to have water with you
• You’ll lose your taste for a while. Thanksgiving and Christmas meals won’t be enjoyable, but Easter will be almost back to normal. You might have some loss of taste for sweets permanently and you might struggle to swallow breads and dry foods.
• You will have treated the cancer in the best known method and have confidence that there is less than a 10% chance that it will return

“What about not radiating. What are your thoughts?” I asked.

“It’s a coin toss. About 20% of the time it returns without radiation. I’ve had patients not treat and return with no cancer and I’ve had patients not treat and return with cancer but in a different location where we can’t treat it. It’s really up to you.”

My wife and I looked at each other and we both had a level of confidence we didn’t experience the previous week at the radiologist.

“Avoiding radiation is not an option. When can we start?”

“We’ll get you fitted for a mask in 2 days and start 13 days after that.” he said.

“Thank you” I said as I firmly shook his hand. “My confidence is dramatically higher than it was a week ago. I feel peace knowing that you specialize in head and neck cancer.” “How many people have you treated after TORS I asked?”

“Hundreds” he said.

Much like the expert in Canada had caught dozens of fish while others were skunked, my expert would treat me with the specialized techniques that others simply aren’t aware of because they have never treated cancer after TORS surgery. And my results will be similar. I’ll be free of cancer with minimum impact to my quality of life.

Tears formed in my eyes on the drive home as I talked to my wife. “God is with us, dear. It’s a miracle that we discovered TORS, it’s a miracle that they found it, and we now have a radiologist whom we fully trust to completely eradicate any remaining cancer cells from my body. I’m overwhelmed with gratitude; I think the emotions are going to start now that we have a solid plan in place.”

Thank you, Jesus that you revealed TORS to me. Thank you that you revealed cancer to the surgeons. Thank you that they removed it. Thank you that you prompted me to get a second opinion. Thank you for the treatment plan that doesn’t require “burning the barn to kill the rat”. Thank you for the hope I feel that this cancer will finally be gone for eternity. Thank you for my wife and her support. Thank you for my job and the support from my family, friends, and co-workers. Thank you for the lessons you taught me on the fishing trip with my son and thank you for my family.

P.S. I’ve received overwhelming feedback about the inspiration my story is offering people so I’ve decided to write and publish a book. If you’re interested, you can pre-order it here. I’ll be donating 200% of the profits to help raise awareness of treatment options for head and neck cancer.