I Have Cancer Part 12-Denial

9/10/2019

….I reach my hands out to the heavens, yeah,

And I lift my voice to you alone.

To you alone…

And I sing Hallelujah, you are my God.

Maker of the heavens….

I have a confession to make. I’m struggling. I’m really struggling. As I sit in the waiting room preparing to do my “dry run” for radiation that will start tomorrow I’m struggling. Cancer sucks and I really really really don’t want to do 6 weeks of radiation with a lifetime of side effects. My mind simply will not accept that I’m going to start radiation tomorrow. I try to make up every excuse I possibly can to avoid it.

When people ask me how I’m doing I joke about them strapping my head to the radiation table using the “mask” so that when the flesh that is getting scorched with the radiation to my mouth and neck I won’t move. The smoke will just come out my ears and they’ll know they’ve cooked me enough to get the cancer out.

I guess I’m still in denial. I just came back from the dry run. I walked through the lead door that was a foot thick to my radiation “chamber” that is called “Discovery”. Discovery. What an interesting name. Kinda like I discovered a lump on my neck just a little more than 4 months ago. Kinda like they discovered cancer in the lump with the needle through a biopsy. Kinda like they discovered another lymph node with cancer and failed to discover cancer in my tonsils after my surgery. Kinda like my discovery of TORS and the discovery of the 12 mm tumor in my right base of tongue because of it.

The next 6 weeks will be a journey of discovery for me as I discover how to intentionally expose myself to radiation that will kill any trace of cancer which may or may not be present and kill the cells that allow me to taste for a few months with potential permanent damage to the cells that allow me to taste sweets and partial permanent damage to the cells that produce saliva in my mouth.

I entered the Discovery chamber and observed a very large mechanical device, the radiation machine. “How are you doing” the nurse asked. I barely choked out the words as I fought the tears.

“I don’t want to do this” I said.

A few minutes later they put on my favorite Pandora radio station, Jeremy Camp Radio. I removed my shirt and they put a warm blanket across my chest. My neck laid across a plastic support and I placed the mold into my mouth that will keep my tongue from moving. They then laid the mask across my face and strapped me in. The mask holds my head firmly in place and I definitely can’t move.

The large lead door shuts and they begin the “dry run”. The motorized head of the radiation machine rotates around my head. I watch the aperture open and I see the reflection of a green laser on my mask. Precision placement is key, and the lasers will ensure that I’m in exactly the same location every day.

A few minutes later, I’m done with the dry run.

If you sense a bit of negativity and cynicism in my writing it’s because my writing is a picture into my soul. It’s how I’m feeling. I try and try and try and for some reason I’m unable to push through this one. I feel a bit like a hypocrite because so many people come up to me and tell me how inspiring I am to them. They tell me how much courage I have.

I don’t feel that way now. Honestly, I just want to run away from this and pretend it never happened. The chocolate cake at lunch didn’t satisfy my craving for the sweets that I may never taste again so I had a cinnamon roll. It didn’t satisfy the cravings, either.

I miss you mom. It was rare, but on the days that I felt like this, like I needed to cry and be held you were there. You reminded me that it was ok and you told me how proud you were of me. Your words inspired me and carried me through those days. I miss you mom, I’d do almost anything to hear your words today “I’m proud of you son, you’ll make it through this.” But I won’t hear those words until I meet you in heaven. And I won’t be meeting you in heaven for a very very long time because I’m going to kick cancer’s butt, I’m going to get through this season and I’m going to use my experience to inspire and encourage others who are struggling.

Stop whining, Damon. Mom also used to say something else.

Build a bridge and get over it

So how do I get over it (my denial)? By going through it. There’s simply no other answer. Debbie and I spent the weekend together alone. It wasn’t like our normal date weekends. It was much different. My mood was somber. I cried and I whined. I shared my frustration and anger.

Exactly 6 years ago on September 10, 2013 Debbie told me she had cancer. The next 2 weeks were hell as the fear of death crept in. The words of the radiologist were very assuring. “It’s the most treatable form of cancer on the planet.” Radiation and Chemotherapy would eradicate her cancer and we’d never have to deal with it again. And they did, until 16 months ago when Debbie told me she had another lump in the same place. This time surgery removed it and she’s cancer free.

But why didn’t the radiation kill everything? Why did she get another lump when her cells were cooked and poisoned from chemo? Why didn’t radiation do the job on her?

And the big question that keeps me in denial. If it didn’t work for her then what confidence do I have that it will work for me?

That’s it. That’s why I’m in denial. I don’t see the purpose in radiation. The only purpose I see is that it’s an “insurance clause” just in case there are still cancer cells. And these cancer cells could result in cancer in the future in a place where it might not be treatable.

I have a family to take care of. They need me to guide them and protect them. They need me to be there for them in the good times and the bad. Just like the phone call I got a few days ago when my daughter was sobbing. She needed her dad and I was there. Just like the conversation with my other daughter on her bed last night when she was sobbing. She needed her dad and I was there. My son needs me to model being a man of God so that he can be a man of God for his family.

I have a wife who I love with all my heart. A wife who needs me to be by her side as we navigate the waters of life.

This is why I need to have radiation. I’m not having radiation for ME, I’m having radiation for THEM. I might choose not to have radiation if it was just me. But it’s not. I have a family that I love and I’m going to eradicate cancer from my body forever FOR THEM.

There’s the bridge, mom. I feel myself starting to get over it.

How selfish would it be for me to say “I want to be able to taste sweets for the rest of my life so I’m going to put my family’s security at risk.” That’s what it boils down to. My own selfish desires to continue enjoying sweets and be able to spit when I feel like it. My own selfish desires to avoid 6 weeks of pain. That’s why I’m in denial.

Get over it.

Pity party or perspective, Damon? The pity party has been going on long enough. Now let’s get some perspective.

  • The 3 year old toddler resting his head on daddy’s shoulders as he endures radiation. He’s the one with courage.
  • The man that my friend told me about who knew the radiation would blind him but it was necessary to save his life. He’s the one with courage
  • My friend who went through chemo for 14 months and stopped to enjoy life for a brief period that might ultimately cost him his life. He’s the one with courage
  • My wife who has endured cancer twice and has never complained about the side effects. She’s the one with courage.

And I’m whining because I won’t be able to taste sweets for the rest of my life and I’ll be in pain for a few weeks. Perhaps some cheese would go well with this whine.

Perspective is a powerful thing.

Get over it. You have a family that needs you. You have people that you don’t know that need to be inspired by your writing.

I’ve built the bridge and I feel like I’m getting over it. The bridge was perspective and purpose. And I’ll get over it.

Thank you Jesus for perspective. Thank you for my family that will never experience the void of a dad who didn’t survive cancer. Thank you for my wife whose courage through 2 rounds of cancer is an example for our family. Thank you for medicine that can eradicate cancer and thank you for my home being less than 30 minutes from one of the top head and neck cancer treatment centers in the world. Thank you that my radiologist is considered one of the best for this type of cancer, and thank you that you made a way to find and remove the cancer. Thank you in advance for the lives that will be inspired as they read this and choose to take action.

And thank you Jesus for my mom. Thank you for her words that spoke to me even though she’s with you. Thank you mom, I needed you today and you were with me as I built this bridge.

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.


I Have Cancer Part 11-The Final Treatment Plan

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 10th 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.


I Have Cancer Part 10-The Results are In!

8/2/2019

A little more than 10 hours ago I was in the operating room. I looked at the surgeon and with 100% confidence I boldly proclaimed:

“You’re going to find the cancer and remove it completely.” They responded by saying “we’ll do our best”.

I repeated this to the nurses, doctors, and everyone else that was in the operating room with the Trans Oral Robotic Surgery Robot. “You’re going to find the cancer and remove it completely.”

“Death and Life are in the power of the tongue and those who love it will eat its fruit” Proverbs 18:21

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I know it sounds a little “woo woo” but I firmly believe that what we say and how we say it brings life or death (figuratively or literally). In my first book I talk about how I used my words to transform me from the inside out. My counselor and friend taught it to me, it’s called “mirror work” and it’s a requirement for every man I coach. Literally we help men define the man they want to be. Then we challenge them to speak these statements out loud while looking directly into their eyes in the mirror and speaking with such boldness that they absolutely believe it, even if the man they are isn’t the man they want to be.

It transformed my life and it transforms their lives.

I’ve been speaking the same words that they’d find cancer and completely remove it with absolute belief since I discovered TORS. A few days ago I had nearly a dozen men lay their hands on me and boldly proclaim it as well. One man finished the prayer by saying “Jesus, the doctors may not know where the cancer is but you do. Guide their hands and their eyes during surgery to find it and completely remove it.” Thank you for that bold prayer and belief!

But before I get to the results it’s very important to share the events of the last few weeks in a little more detail to fully appreciate how I got here.

Recall I mentioned a little earlier that I came across a study that showed the survival rates for people with the exact type of cancer and location that I have. In the previous blog I decided to protect my wife and family from the data I’d discovered, but I’m going to share it here using the previously mentioned Kaplan-Meier plots. When I saw these plots my heart dropped. For those who don’t know how to interpret the plot there are 2 lines. The green line and the blue line. The green represents head and neck cancer patients where they successfully identified and treated the primary source of the cancer. The blue line represents people exactly like me. People where they were unable to identify the primary source for cancer. The survival rates are statistically different (p=.03 means there is a 3% chance of being wrong when stating the survival rates are different for cancer of unknown primary source than for cancer of known primary source).

The data representing my situation was clear and compelling. 52% chance of survival after 5 years. Stated differently, I could flip a coin and the probability of it being heads was exactly the same probability of me being alive in 5 years. However, because I understand Kaplan Meier it wasn’t 5 years, it was 2 years. I had a 52% chance of being alive in 2 years if I continued down the path that ALL of the professional doctors recommended at tumor board.

Let that sink in for a minute. It only took a microsecond for me to realize that I needed to take action on this data. Literally, my life and my family depended on it.

Pain Drives Change. It’s the title of my first book and it will probably be etched on my tombstone. This statement will become part of my legacy. The pain of sticking my head in the sand and choosing to blindly accept the outcome was greater than the pain of me doing deeper research. I chose to research. My life depended on it.

One other brief note. I made a decision when I saw this data that I would NOT share it with my wife or my children. As a father and husband I take my responsibility to protect my family very seriously and I chose to protect them from the fear that would ensue when they saw this data. My challenge to every man that is reading this. Ask yourself the question:

Am I Protecting my Wife and Children or am I Avoiding my God Given Responsibility to do so?

If you are not actively protecting your family it’s time to man up. Make a decision now and start protecting them. If you don’t know how, email me. I am actively coaching men in my coaching business and transforming generations in their family because they have decided to man up.

Man UP!

I know I’m being bold but I won’t apologize for it. The statistics are clear on the impact of a father in children’s lives, you can read about this in chapter 5 of my first book, pain drives change. Man up and start protecting your family emotionally, physically, and financially. Your unborn grandchildren are dependent on your decision to do so.

Ok, back to my cancer story.

The data from the same article on survival rates also indicated that 72% of the Transoral Robotic Surgery identifies the primary source. If I could somehow get TORS my likelihood of living had a high probability of shifting to 95%+!

My wife calls it hyper-focus mode. I call it a gift from God. When there’s a problem to solve it kicks in and I’m relentless until the problem is solved. Increasing the likelihood of being alive in 5 years to >95% was easily the biggest problem to solve of my life.

Study after study after study confirmed the findings. TORS is highly effective at finding CUPS in the base of the tongue. I knew I needed TORS and I’d stop at nothing to get it.

When I shared the Kaplan-Meier plots with my oncologist she quickly got up, consulted her peers and put an emergency referral into the UW. She cautioned me that it might be weeks before I would get in to see the surgeon. It was a risk I decided to take.

The next day when I hadn’t heard back from the UW scheduling department I looked on the internet and found the phone number for UW scheduling. I called and they couldn’t find my referral, saying it might not be in the system yet.

I said thank you, hung up, and immediately called back. This time the receptionist found something in the system. She gave me the direct phone number for the TORs surgeon’s scheduling nurse. I said thank you and hung up.

I called the scheduling nurse and left a message. I didn’t hear back.

The next morning I woke up and I was anxious, praying fervently that I’d hear back from the UW. At 11:30 a.m. my cell phone rang. It was the scheduling nurse. She shared that the surgeon didn’t have any openings and referred me to his other office. I thanked her, but kindly pressed her on the phone.

“I have cancer and my radiation is schedule to start in 10 days. Is there anyway he could get me in earlier” I pleaded.

She pulled up the calendar and was able to find a few openings but I shared with her that I’d be on vacation in Eastern Washington on the dates she provided. I let her know, however, that I’d gladly drive the 6 hours to see him if possible.

“Let me call you back in a few minutes” she said.

20 minutes later the phone rang.

“I just spoke with the surgeon directly. He’d like to take your case to the UW tumor board today at 4:00.” She said.

Tears welled up in my eyes and I thanked her repeatedly for being my advocate.

“Unfortunately, we can’t locate your records and they are all needed within an hour if your case is going to go in front of the tumor board.”

I’ll make it happen I responded.

I hung up my phone and searched for the my nurse navigator’s phone number. I couldn’t find it. I searched for the phone number of Evergreen on my phone, I couldn’t find it. I searched for the phone number of the other nurse navigator. I couldn’t find it. I searched for the phone number of a consultant I was scheduled to have lunch with. I couldn’t find it.

My phone numbers had literally been wiped from my phone and I didn’t know what number to dial to talk with Evergreen to get my records to UW!

I prayed, called my wife, and she located the paperwork for my oncologist. I thanked her, hung up, and called my oncologist. The receptionist answered. She assured me that all paperwork of my case history would be there on time. I thanked her and asked her to confirm when it arrived.

Less than 30 minutes later I received the call. UW had all the history they needed!

The next 4 hours my heart raced out of my chest. I’d just experienced what I believe was a miracle.

Unfortunately, I didn’t hear back from UW that day. The next day my family and I were leaving on vacation for a week and so I doubted I’d hear back for at least a week.

I was wrong. My phone rang at 9:00 a.m. It was the scheduling nurse. “Damon, how soon can you be here. We just had a cancellation”.

“I’m on my way. I just have to drive across the bridge. See you in 40 minutes.”

I called my wife and told her we’d just experience another small miracle. I was so excited. (Note: I previously blogged on my visit here.)

I was overwhelmed with the quality of care I received at UW and will be forever grateful to the scheduling nurse for making this visit happen.

The surgeon shared some background and said that there were basically 3 outcomes:

  1. A grand slam. They could find it, remove it completely including the margins and it would be forever removed from my tongue.
  2. Discover it. They could find it but might be unsuccessful at identifying the margins in which case he wouldn’t know if it was all out
  3. Not discover it. There was a 50/50 chance that he wouldn’t find it
    1. He also shared that it was possible that cancer simply didn’t exist in my body any longer, that my immunity system might have fought it off, but that we wouldn’t chance it.

He also shared that he’d talked to the radiologist to determine if the radiation treatment would be different if he found it. Finding it would allow the radiologist to target radiation and would be a great outcome.

He asked me what I wanted to do. I didn’t hesitate. “Let’s do it.”

I proceeded to ask a few more questions. How frequently does CUPs happen? About 3% of the time he responded. Were the Kaplan-Meier plots I’d previously seen valid (were the chances of my surviving after 5 years 50% if they didn’t find it)? He shared that the data in the plots was valid at the time but since then they’d refined treatment and survival rates were comparable at between 90 and 95%.

He shared that this type of cancer is rapidly rising, the tumors are quite small (.9 cm as I reminded him of my research). He shared that I’d be in the hospital for 2-3 days but that my recovery would be 3-4 weeks and I could expect full recovery.

I asked him if he was one of the pioneers of this surgery and he shared that he was. I asked how many times he’d done the surgery, he shared that he couldn’t remember, but likely in the hundreds.

My confidence was high. Let’s do it I re-affirmed.

A few hours later we’d scheduled my surgery for a week after my vacation. I was going in for TORS!

And here we are nearly 12 hours from the surgery. I’m sitting here eating a liquid diet. I have experienced almost no pain, and I feel like going for a bike ride! Fortunately, I brought my computer and I pulled it out to start writing.

As I write I once again am experiencing the “flow state” that I often experience when writing about my experiences. I literally cannot type fast enough to get my thoughts out.

I awoke from the surgery at around 10:00 a.m. It took a little longer than expected. My first words, “did you get it”?

WE GOT IT!!!! IT WAS ON THE RIGHT SIDE OF YOUR TONGUE. WE REMOVED EVERYTHING INCLUDING THE MARGINS!

A GRAND SLAM I proclaimed, followed by a smug “I told you so!”.

My wife later informed me that they didn’t even need to biopsy my tongue. They visually saw it right next to the location where my tongue was previously biopsied.

A miracle? Absolutely. If the biopsy had found the cancer I would NEVER have had TORS surgery. I would have relied on Radiation to burn it out and would be 5 days into radiation right now.

Greg’s prayer was clearly answered. Jesus guided the surgeon’s eyes to the exact spot my cancer was. And since they knew where it was I didn’t have to have a “hemi glossectomy (.e.g. half my tongue). I only had to have a tiny tumor removed from the right side of my tongue. Because of this I am l literally experiencing almost no pain. I’ve been up and walked around the hospital many times. I’m eating a liquid diet and I’m writing this “in the moment”.

Words will never describe what I’m feeling today. I woke up from bed this morning at 4:15 after barely sleeping all nigh not knowing my future with cancer. Uncertain of my long term viability. Uncertain of how I’d handle the uncertainty of never knowing the source if they didn’t find it.

But I chose faith. I told my wife on the drive over to the hospital that they would find the cancer and we’d be rejoicing when I awoke from the surgery. My faith convicted me of this outcome. When I awoke from the surgery I was quickly reminded of God’s hand guiding me every step of the way and God’s hand guiding the surgeons as they saw and easily removed this cancer from my body.

I felt a deep need to worship Jesus. I turned on Pandora radio and the song “There will be a Day” by Jeremy Camp played. Tears flowed from my eyes as I remembered my mom in Heaven and I truly felt like she was my guardian angel, watching over me today.

The next song was one of my favorite worship songs, Your Great Name. Tears flowed and I raised my hands to the heavens praising Jesus for saving my life and revealing this cancer.

My wife came over and I could barely speak the words, but I told her of the data that I hadn’t previously shared. I told her that I wanted to protect her and didn’t share that the survival rate was 50% after 5 years because I didn’t want her to worry. I looked her in the eye and I said “we’ve experienced a miracle today and asked her to pray for me and thank Jesus.”

Thank you Jesus that you revealed my cancer to the surgeon’s today. Thank you for your hand guiding my thoughts and decisions over the last few months leading me to the miracle today. Thank you for the gift of life. Thank you for all the people who have been praying for me. Thank you for my children being so content that they rarely feared this cancer. Thank you for the men who laid hands on me and prayed. Thank you for my nurses today who are taking great care of me. Thank you for the doctors that previously identified the cancer and thank you for the referral to the UW. Thank you for the gift of “hyper focus” that you have given me, the gift that has resulted in my body being cancer free as near as we know right now. Thank you in advance for the lives that will be impacted from my writing, I give you all the Glory Jesus.

Amen

Post Script-

I just finished talking with one of the surgeons. He shared a few more details saying “this is a good day”. They identified the cancer using a camera. It was literally 5 mm. from the location where my tonsils were removed 6 weeks ago. They were able to visually discern a difference and took a biopsy. The pathologist returned proclaiming it was cancer. He said everyone in the operating room high fived each other. UW was one of the pioneers of this surgery 10 years ago and today they were celebrating another victory. He shared that TORS is becoming the “Gold Standard” for this type of cancer and that he is building his career on treating this form of cancer. He shared they will be bringing my case before the UW tumor board on Wednesday and deciding next steps, but typical protocol is “lightweight” radiation. He shared that the amount of radiation and the ability to focus the radiation because of this finding would be dramatically decreased. He then said 2 things I’ll never forget. The first thing is 10 years ago this type of surgery wasn’t possible. Removal of tumors like the one they found would require splitting the mandible, a 12-15 hour surgery with significant degradation of quality of life afterwards. The second thing he shared was that the next 6 years of my life will be dramatically improved because they found it versus if they’d had to proceed with radiation treatment when the source was unknown.

My family just left. We are celebrating. DAD BEAT CANCER TODAY!

Thank you JESUS.

I Have Cancer Part 9-On my way to robotic surgery

Sitting in the pre-op room and wanted to share a brief update.Here we go! Transoral Robotic Surgery will begin at 7:30 am PST and complete by 9. It’s been a series of what I truly believe to be small miracles getting me to the discovery and now surgery using TORS. Doctor guesstimates 50/50 chance they will find the cancer. Not me. I believe that I was guided here by the mighty hand of God. He knows exactly where the cancer is and He will guide his hands as they guide the robot to find and completely and permanently remove the cancer!All prayers are appreciated this morning. Thank you all for the constant encouragement. Stay tuned for the good news!

I Have Cancer Part 8: Wahoo!!

Sitting at UW. Just talked to the surgeon. Writing this from my app so it will be brief.

I’ve been accepted and they are going to do the TORS surgery on me!! Surgery is scheduled for August 2nd. My heart is beating out of my chest I’m so excited. I feel like this is a miracle (I don’t use that term litely, I really believe it is given the events that lead up to this).I will keep you posted on details as I get them.

Thank you everyone for your prayers and encouragement.I am heading out on my family’s annual vacation.

By God’s grace I have a solid plan for my treatment and I will be resting and recharging in preparation for this next phase of treatment.

I have Cancer Part 7: Carpe Data!

7/17/2019

The last few days have been a whirlwind. On Monday after talking with my radiation oncologist we decided to pause on the creation of my face mask for radiation and seek out an opinion from the University of Washington about an alternate treatment approach that I discovered while doing some research. Yesterday I met with my medical oncologist and we confirmed that this alternate path was prudent with both oncologists saying “If I were in your situation, I’d do exactly what you are doing. You have to have confidence in your treatment plan. Your life is dependent on these decisions so do whatever you need to do to gain the confidence you need to proceed.”

How did we arrive at this decision? We arrived because I decided to start researching and I brought the research to the experts. This research opened up conversations and might have enlightened my oncologists with information they weren’t intimate with.

I’ve spent my career solving big problems. I’ve been trained as an expert in a methodology known as Six Sigma, and I’ve been certified as a Master Black Belt in Six Sigma since 1999. I’ve used Six Sigma to solve countless problems in my career. I’ve also applied the Six Sigma thought process and approach in my personal life and it’s helped me become the man I am today. I write about how Six Sigma helped me identify the root cause of a lot of my issues when I was younger and how Six Sigma helped me build a foundation for an incredible marriage of 15 years. I used Six Sigma to build the small group system at my church years ago and I use Six Sigma tools and techniques to transform men’s lives and their families through my coaching business, Change YOUniversity.

Six Sigma is in my DNA. I’m a problem solver. Big problems inspire me and the methodical data driven approach to solving problems almost always uncovers a root cause that previously was unknown.

Duh….perhaps I should apply Six Sigma to this problem called cancer that I now have. Duh…..

I’ve avoided it because, truth be known, I didn’t want to see the data. I knew the data would reveal survival rates and I didn’t want to know the “number” that predicted my own survival rate. Once you hear a number about survival rate you can never forget it and it’s permanently imprinted. The number invokes fear and the fear drives you crazy.

However, given that my cancer is of unknown primary source and this only occurs in between 1 and 10% of head and neck cancer cases it would be foolish for me to let fear stop me from doing the research to uncover more details about this fairly rare occurrence called Cancer of Unknown Primary Source (CUPS).

We were poor growing up. I remember Christmas and my friends sharing they’d gotten tons of new toys (remote controlled cars, digital alarm clocks, skis…..), all the things that I never got. Instead of extravagant gifts mom always made sure we had 1 or 2 heartfelt gifts. I was jealous of my friends. But I had something they didn’t have. I had a small metal box filled with parts from gadgets I’d torn apart and rebuilt. When I was bored I’d pull out that box and rebuild an old alarm clock that somebody had thrown in the trash or I’d take apart a remote controlled car that we’d bought at a yard sale for $1 and I’d find the wire that had come unsoldered causing it to malfunction. I’d plug the soldering iron in, resolder the wire, put batteries in an vroom…the RC car was as good as new.

Euphoria. There’s no other way to describe the feeling I got after fixing something that somebody else had thrown in the trash. I remember mom needing a dishwasher and finding one for $10 at a yard sale. I ripped it apart, found the problem and mom used that dishwasher for the next 20 years!

When I was 15 years old I as mowing a lawn for extra money. I looked on the side of the garage and I saw a pile of motorcycle parts. After mowing, I asked about it. “Oh, that’s my old Honda CB 160. It was made in 1967. We tore it apart to try to fix it but were never able to fix it so we just put it in a pile.”

My heart started racing. 1967 was the year I was born and I wanted a motorcycle to ride when I turned 16 but we couldn’t afford to buy me one. “Can I buy it” I asked? “No. But if you promise to put it together and get it running I’ll give it to you.” “Deal, I said”.

That summer while my friends were at the beach I was in my back yard working on that motorcycle. When they called me and asked me to go to the movies I declined. I wanted to work on my motorcycle. I’d spend hours hand sanding the frame, tearing the carburetor apart and rebuilding it. I bought primer and red spray paint and my brother and I painted it in my shed. He’s an artist and he painted flames on the gas tank!

As I methodically rebuilt it I was ecstatic to see if it would run. Finally the day arrived. I put gas in the gas tank and got ready to start it. Unfortunately, the kick starter had stripped out and it couldn’t be fixed without tearing the engine apart. Fortunately, it had an electric start as well. I didn’t have a battery for the bike (I couldn’t afford it), but I did have jumper cables. I attached the jumper cables to the battery wires, pushed the electric start button and it fired up!

Wahoo! It works, it works, it works! I was ecstatic. My brother and I high fived each other. I’d taken a basket of parts that were once a motorcycle that someone else couldn’t fix and I fixed it.

This pattern of fixing things continued with my first car, my second car, my second motorcycle, and a third motorcycle that also started as a box of parts.

My problem solving mind helped me identify a path to college through scholarships that I earned because I analyzed the factors that contributed to other people who had one scholarships. I put these factors into my life (leadership as class president, vice president Spanish club, volunteering, etc.) and I won more scholarships than anyone else in my class. These scholarships enabled me to be the first person in my family to attend college.

I bet you can’t guess what my degree was in? Engineering, of course! One summer after moving to Seattle I decided I wanted an internship in engineering. I put my problem solving brain to work. I went to the job center and I found a job opening at Sundstrand Data Control. I knew a simple resume wouldn’t be sufficient to get me the job so I put my problem solving brain to work. I identified a cryptic signature at the bottom of the job opening. I found the nearest payphone and called Sundstrand and asked for Bob, the person who was the hiring manager.

To my shock, Bob answered the phone. He asked about me and I told him about my passion for solving problems. I shared the story of the CB160. He was fascinated. He asked me to come in. A few days later I was making $11 an hour as a summer intern for Sundstrand Data Control in Redmond! That was a ton of money considering the most I’d made was minimum wage prior to that ($3.85 per hour in those days).

That job paid for my college and turned into my full time career after graduating. That job sent me to Six Sigma school and helped me earn my Master Black Belt in Six Sigma. I learned how to solve manufacturing problems and earned many awards for my problem solving skills.

That job also opened up my next job at Microsoft. I’d trained an individual in Six Sigma at Sundstrand and he moved to Microsoft. When a Six Sigma job came open at Microsoft, he called me up, I got the interview and I was hired!

Microsoft gave me the opportunity to solve some massive problems. The largest being the Xbox 360 Red Ring of Death. I’m not going to share the gory details here, but suffice it to say that my Six Sigma Problem solving skills quantified and predicted the billion dollar warranty impact. More importantly, however, my Six Sigma skills helped dramatically improve manufacturing yields and eliminate the “bone pile” of hardware that was previously not repairable, earning me another award.

I used my Six Sigma skills to identify the root cause of the Red Ring of Death and ultimately drive the solutions to this massive problem.

My cancer of unknown primary source reminds me a lot of the red ring of death problem on Xbox 360. We didn’t know what was causing the red ring of death so we took a trip to the repair center. For confidentiality reasons I can’t share the details. However, I will say that we had very little data at the time to help us isolate the problem so we had to rely on observation and experimentation for a few months to try to stop the problem even though we didn’t know the root cause.

I, however, found some data. It was handwritten. This data identified the failure code for all Xbox 360’s that came in. I used this data to focus the problem solving team. I used the data to convince management to hire resources to help me compile more data. Together with my team we were able to pinpoint the exact problem and identify other problems that were previously unknown. We used this data to eliminate the red ring of death problem. At the time, it was the biggest problem I’d ever solved.

There’s one very important detail that I left out. After we had the data we didn’t know how to analyze it. We spent a few months and were still unable to analyze the data to isolate the problems. I knew we needed to find an expert. I used my problem solving skills and after giving a keynote address at a data conference I flew to North Carolina to talk with my friends at SAS, the company that makes JMP, the statistical analysis tool I use to analyze data. My friend Brad (he build the experimentation platform in JMP) quickly said “you need to use Kaplan Meier”.

Duh….of course, I needed to use Kaplan Meier.

“Um, Brad…what’s Kaplan Meier”.

“It’s a statistical technique that was developed in the medical field to measure survival rates of cancer patients.”

“How do I learn more?”

“Bill Meeker is the expert. I’ll introduce you.”

On the plane ride home I taught myself Kaplan Meier. I applied it to the data that we were previously unable to analyze and almost immediately saw patterns that we never saw before. We quickly started identifying problems and implementing fixes that we had been unable to see before.

Bill Meeker helped us quantify the overall impact and taught me the details of Kaplan Meier.

Today, the quality levels for Xbox 360 are the best in industry. Many of the tools and techniques that I introduced are being used to achieve these quality levels.

I’m a problem solver. It was now time to apply my problem solving skills to the biggest problem I’ve ever faced. Cancer. Cancer of Unknown Primary Source. In manufacturing, we called this NFF (No Fault Found), and it was the biggest driver of return costs. By far NFF was the hardest to diagnose as well.

My cancer is NFF. I got to work immediately and began researching. I’d use the same techniques to solve this problem as well. I’d need to find some data, I’d need to analyze it statistically, I’d need to identify the world experts, and I’d need to be relentless until the problem was solved.

Within a few minutes I discovered that CUPS was a 1-10% problem. I found a PowerPoint from UCLA that talked specifically about CUPS. And I found the Kaplan Meier survival rates comparing treatment for Cancer of Unknown Primary Source (CUPS) with Cancer of Known Primary Source. As expected, the survival rates are lower for CUPS than for known primary source.

“Nothing focuses the mind like a firing squad” Napolean

I dug deeper into the data and I discovered that a new approach was able to identify the source of cancer for 72% of patients with Cancer of Unknown Primary Source. 72%! This new approach had a high likelihood of identifying the source of my cancer! And if the source of my cancer could be identified, the treatment could be more targeted, and my chances of survival would certainly go up!

Pain drives change. I know, you keep hearing it but it’s true. The pain of not knowing the source of my cancer drove me to change and start doing the research. The research identified a new source of pain, lower survival rates. That pain is now driving me to change my approach to interacting with my oncologists and ask questions scientifically.

I dug up the original study, printed it, and pulled out my highlighter. Transoral Robotic Surgery (TORS) enables surgeons to perform surgery on the tongue that previously required the splitting of the mandible to perform. In this surgery of the tongue surgeons were able to see and perform precise biopsies in areas that were previously inaccessible. Because of this, they were able to identify the source of cancer in 72% of the patients and remove it! Furthermore, a large portion of the source identified was BOT (base of tongue).

I looked closer at the report and realized the raw data was included (at row level detail for the geeks that are reading this!). I quickly imported the .pdf data into PowerBI and transformed it using Power Query.

Within a few minutes I began visualizing the data. I quickly realized that 74% of those in this study were males and the median age was just a little older than I am (56). As I studied the data closer I discovered that the actual size of the tumor that was identified in TORS was listed. The median size was .9 centimeters (a little smaller than an inch). No wonder they didn’t locate the cancer if it is on my tongue! A random biopsy of the tongue to find a tumor .9 centimeters? Not very likely. Here’s the Power BI report I pulled together.

I’ve done this a thousand times in my career but nothing I’ve done has been as important as this. The data convicted me that I needed to learn more about my procedure and ask if I’d had TORS. If not, why not? If so, what was revealed?

My meeting with the Radiation Oncologist was Monday. Fortunately, I’d called ahead and requested 30 minutes to discuss my case. We had a great conversation. I discovered that TORS was not performed. I asked why and was told because the TORS robot was not available at the hospital that did the surgery. When she shared the certainty of the tumor team that my cancer was in the base of my tongue I told her I agreed based on the data I’d found.

When I shared the Kaplan Meier plots comparing survival rates of CUPS vs. Known Primary Source she agreed with my conclusion. Further evaluation via TORS was a wise and prudent decision. She consulted her colleagues and they shared that UW and MD Anderson had TORS equipment. I shared the paper I’d found with her and discovered that UW had the most results. This gave me even more confidence that if I could get into the UW and get TORS it would be done with a very experienced team!

She called the UW and referred me, reminding me that it might take a while to get in.

The next day I called UW scheduling office. They gave me the surgeon that would be performing TORS on me scheduler information. I called her and left a message.

Today at 11:30 a.m. I heard back from her. It would be 2 weeks before I could see the surgeon. I apologized in advance for being a pain in the butt, but I shared that my request was fairly urgent because radiation was scheduled to start in 12 days. She politely said “let me call you back”.

20 minutes later I received her call. She had talked to the surgeon and he said he would like to bring my case to the UW tumor board later that afternoon! My jaw hit the floor. How is it that 48 hours ago I’d received the referral and without a face to face appointment had my case going in front of the UW tumor board?

I’m a man of great faith. I know how it happened. I have many people praying for me and I firmly believe that God intervened on my behalf to get my case in front of the tumor board.

It’s now 6:00, 2 hours after the tumor board was to review my case. I haven’t heard back yet, but expect to hear tomorrow. Furthermore, I’m extremely confident that they will decide to perform TORS on me because of the unique nature of my case.

Thank you Jesus for this miracle. Thank you for my ability to research and analyze data. Thank you for the discovery of TORS in my research, and thank you for the promise that this surgery has a high likelihood of identifying the primary source of my cancer. Thank you that you’ve created me to be a problem solver and given me the skills of data analysis. Thank you that I discovered the data and that the UW is just across the bridge from my home. Thank you for the scheduling nurse going directly to the surgeon today and thank you for his willingness to bring my case to the tumor board. Thank you in advance for the promise that I will receive TORS and they will find my cancer. Lord I pray my writing and my story will reach people who need hope. I pray it will reach people who have cancer but don’t know it yet and it will inspire them to get that lump checked. Thank you Jesus for my family. Guide them and protect them through this journey.

I Have Cancer Part 6- Cancer of Unknown Primary Source (CUPS)

7/15/2019

My wife reminded me that I haven’t always had the best oral hygiene. When we were first married I didn’t brush my teeth in the evening because I was too lazy and too tired and clearly didn’t know the impact of not brushing. Somewhere along the way I discovered how important brushing is and started brushing in the evening as well as morning. It seems like it worked. No cavities in decades!

At least I thought it worked. My primary dentist retired about a year ago and I haven’t bothered going back in for my twice a year check-up. However, when my radiation oncologist told me how critical it was to see the dentist I took her advice and scheduled the appointment.

My new dentist introduced herself, she’d been practicing for a few years since graduating. I looked around the office and noticed all the equipment was new. When we took X-Rays they still placed the old-fashioned lead jacket on my chest, but this time the images showed up immediately on the large computer screen in the exam room. I hadn’t really thought about it, but realized how much more effective digital images are. I also realized how much radiation I’ve already been exposed to with multiple CT scans of my head and neck region and now the dental X-Rays.

Cool technology, and great news! I didn’t have any cavities. When my new dentist asked how frequently I floss I let her know that I didn’t floss.

“It shows. You have the early stages of gum disease.”

Once again, the fear creeped in. Not because of gum disease (arguably, my own fault for not flossing regularly…my system is perfectly designed to give me gum disease.) No, the fear creeped in because she reminded me of the dangers of radiation.

Radiation weakens the bone structure in the jaw, and it’s known as Osteoradionecrosis, or bone death due to radiation. The threat of Osteoradionecrosis, ORN for short, put a deep fear in me. ORN reveals itself after a tooth needs to be extracted after you’ve had a certain dose of radiation. The problem is, once the tooth is extracted there is a possibility that the wound will never heal, and it can begin rotting the bone. In some cases, parts of the jawbone need to be surgically removed.

My new dentist reminded me of ORN and reminded me that I needed to improve my oral hygiene immediately. Furthermore, I needed to start brushing with prescription toothpaste 30 minutes after each meal.

A text message with my sister confirmed my fears. Her radiation from 40 years ago resulted in a lot of dental problems.

Your system is perfectly designed to get you the results you are getting

My oral hygiene system of brushing twice a day and not flossing resulted in the start of gum disease. Further neglect of my oral hygiene after radiation treatment would be the perfect system to give me the potential of major problems in the future.

I’ve always struggled with flossing. Not anymore. I purchased 8 toothbrushes and have ordered multiple containers of floss. The toothbrushes are strategically placed so that I always have one at hand after eating. The floss is also strategically placed. Furthermore, I’ve added 3 daily questions to my “morning habits” checksheet to ask if I’ve flossed and brushed the previous day. In the week since seeing the dentist I’ve discovered that my “habit of daily habits” has made it very easy to add a new habit of flossing and brushing after each meal.

My new system is perfectly designed to protect my oral hygiene and should minimize the potential of ORN induced infection. I fully understand the “why” of this change and I’m committed to this new habit for the rest of my life.

But wait…there’s more!

Apologies for the crude picture of my teeth, but I think it makes the point I’m about to make.

“Damon, you have a spot on your gums and I’m concerned about it. I’m not an expert, but I want to make sure it isn’t cancer.”

Whack. Another slap to the face. Immediately my mind started asking questions. Could this be the source of the cancer in my lymph nodes? The cancer they were unable to locate from the surgery and removal of the Stoddard Steak as well as the extraction of my tonsils? If yes, why didn’t they tell me earlier? My mind was racing. I didn’t know whether or not to be elated or deflated.

I called my wife and together we processed ORN, gum disease, and the potential that this new spot on my gums might be cancer. I love you Debbie Stoddard, I can’t imagine walking this journey alone. I’m so blessed to have you as my wife, my life partner as we walk through life “in sickness and health”.

That was Monday night. By Tuesday morning I’d processed this new information. I implemented the new habits of brushing and flossing onto my daily habits checklist, I scheduled my appointment with the oral surgeon for Friday, and I called my nurse navigator. She recommended a follow-up appointment with my ENT specialist and I scheduled that for Thursday.

Forgive me for the tangent, but if you’ve been reading my blogs and/or my previous book you’ll notice a pattern. Pain Drives Change. The only question is how do we respond to change? I’ve learned in my life that pain is a signal that something in the system is broken. I have a choice. Dwell on the pain and let fear engulf me, or accept the pain and allow God to make the changes in me that need to be made.

I choose to accept the pain and respond with action. Action is the best and strongest antidote for fear. I chose action and in this choice my potential suffering from the pain is eliminated. Truth be known, Tuesday (less than 12 hours after my dentist appointment) I felt more energized and optimistic than I have in a long time. By accepting the “pain” I eliminated the suffering.

Suffering=Pain -Acceptance

My friend taught me this a few months ago and it is very profound. When in pain you can easily avoid suffering by simply accepting the situation. Furthermore, you can avoid the despair associated with suffering if you can apply meaning to your suffering.

Despair=Suffering-Meaning

I have decided to face this cancer battle by applying meaning to my brief bouts of suffering from my pain. The meaning I am gleaning from my cancer is crystal clear. I want to use my experience with cancer to provide hope and encouragement to people who are experiencing cancer and to reach people before cancer spreads and inspire them to get it checked. My writing has proven to be an incredible source of meaning for me and the feedback I’ve already received from those who read about it have reinforced how meaningful my journey through cancer is to them.

A friend reached out to me later that day. He’d started reading my book and was reading my blogs. As we sat and talked he shared with me how meaningful my writing was to him. He shared that he had faced difficult situations in the past and responded differently than I am. He shared that he no longer wanted to be like that and my writing was giving him a vision for his future. Thank you, Jesus for providing meaning to my journey through cancer. I pray you would make my journey and story available to anyone that it will help.

Pain Drives Change. Don’t waste your pain by suffering. Accept it. Don’t waste your pain by having no meaning. Use your pain to serve others. I guarantee your perspective will shift dramatically when you take action and act on the meaning behind your pain.

OK. Sorry about that sidebar, I just thought it was important to share. I arrived at my ENTs office Thursday morning. Her office was able to create an opening less than 12 hours after I’d requested it. We talked about the spot on my gums. She quickly looked and said she wasn’t concerned. We talked about ORN. She reminded me that it was a very low likelihood. We talked about saliva loss and the surgery. She looked at me and said “you’ll be fine.”

I left her office relieved and thankful for her expertise in identifying the cancer in my lymph node through the biopsy. I was relieved for a short period of time.

I decided to follow through with the appointment with the oral surgeon the next day. I entered his office and once again was incredibly impressed with his knowledge and compassion. He gave me a fist bump and a thorough oral exam. He confirmed my ENTs diagnosis. No cancer here.

I asked him about ORN. He confirmed it can be bad, but said it is a function of the dosage of radiation and said he’d have to know in order to give me the likelihood of occurrence. He ended the session by offering do it for free. I thanked him and reminded him that I have great insurance so charging wasn’t a problem.

Leaving the office I called my wife and we processed the news. The spot on my gums was not cancer, leaving us where we started a week ago. We didn’t know the source of the cancer. Truth be known, we didn’t even know if I still had cancer. There is a likelihood that the removal of my tonsils also removed the cancer, but they couldn’t find the cancer because it was so early.

As we talked the truth of it all began to set in and I once again started crying. I have cancer, or I at least have a high likelihood of cancer. The experts don’t know exactly where to treat it, but they have a strong belief that my cancer originated in the base of my tongue. So, they’ve devised a treatment plan to maximize the likelihood of eliminating the cancer of unknow primary source. A treatment plan of 6 weeks of radiation with potential side effects of ORN, saliva loss, turkey neck, and 6 weeks of pain that would easily exceed what I’d previously experienced. A treatment plan that should have a high cure rate, but can’t be known for certain because we still don’t know the source.

I decided it was time to do some research. I’ve avoided research up until now because I didn’t want to put survival rate numbers in my head that I couldn’t remove. I couldn’t avoid it any longer, I needed to do the research and understand this type of cancer a little deeper. I needed to understand why it wasn’t located and determine if there were any other known treatment options. I needed to apply the 30 years of professional problem solving and statistical data analysis to my own problem, the problem known as CUPS (Cancer of Unknown Primary Source). And I needed to do it quickly. Monday would be the day when we finalized my treatment plan with the radiation oncologist. My wife agreed and I got to work.

That was Friday. I’m writing this on Monday afternoon after my discussion with the radiation oncologist where we collectively decided to put my radiation treatment on pause and seek an emergency referral with UW Cancer Research. CUPS is very rare (between 1% and 10% of these types of cancers). Because of the rarity my initial research indicated it would be prudent to seek another opinion.

I’ll talk more about my research findings and my path forward in the next blog. Now it’s time to sign-off. I have a date with my beautiful wife and I’m not going to be late!

Thank you, Jesus for guiding my path in this cancer treatment. Thank you for the meaning you’ve helped me see and thank you for the people who are benefitting from sharing my story. Thank you for the peace I am experiencing and thank you that I have a little time to continue researching and get other opinions. Thank you for the people in my life who have encouraged me to seek out different opinions, and thank you for the events leading up to my conviction to do so. Thank you for the quality of care I’ve received up until now and thank you for helping me find this cancer early. Thank you for the opportunity to write. Thank you for the opportunity to apply 30 years of professional problem-solving experience to my own cancer. Thank you for my curious and inquisitive nature and the ability to ask probing questions that many times lead to deeper understanding (even though they drive others crazy at times!). Thank you for the hope I’m feeling now as I wait for the referral appointment with the UW.

As my mom always used to write in her journal, ‘guide me and protect me and my family on this journey’.

I Have Cancer-Part 5 “The Good News and the Bad News”

“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 4th 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 4th 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 4th 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…..

I have Cancer Part 4: Surgery and Recovery

2 Corinthians 12:7

Therefore, to keep me from becoming conceited, I am forced to deal with a recurring problem….

I love Star Trek. I watched it as a kid. I loved how Bones was always there with his handy dandy medical device. Just wave that wand over someone when they were injured and poof! Just like magic, the ailment was treated, and the patient was miraculously cured.

As an adult, I was so excited when they came out with Star Trek, the movie. You might remember Start Trek IV -The Voyage Home. The crew of the USS Enterprise needed to go back in time to save the whale. Chekhov had a brain injury, and was lying unconscious in the operating room. Bones rushes up to the operating room to find the brain surgeon with a drill. You can hear the drill as the RPMs wind up, preparing to drill a hole in Chekhov’s head to relieve the pressure. Bones looks at the surgeon and has a dialog that I’ve never forgotten (here’s a clip from my favorite scene https://www.youtube.com/watch?v=1i3gp_aN1cs)!

“My God man!

Drilling holes in his head is not the answer.

The artery must be repaired. Now put away your butcher knives and let me save this patient before it’s too late!…..we’re dealing with medievalism here! Chemo therapy…..”

He then puts a gadget on Chekhov’s head. Beep beep beep. Chekhov opens is eyes and he’s healed!

Bones, I wish you were here a few years ago when my wife had to undergo chemotherapy and radiation for her first round of cancer treatment. I really wish you were here for the second round of medievalism when they pulled out the butcher knives and carved out the cancer.

me·di·e·val

[ˌmed(ē)ˈēvəl, ˌmēd(ē)ˈēvəl]

Definition: Very old-fashioned or primitive

I must admit, it does seem rather barbaric, old fashioned, and primitive. A small lymph node with a trace of cancer requires surgery? Debbie and I thought nothing of it, maybe a 30-minute procedure with a small incision.

Man were we wrong. It’s been 8 days since the surgery and I finally feel decent enough to write this blog! Medication every 4 hours to stop the pain, unable to sleep more than 2 hours at a time, talking hurts. Outside of a few short walks I haven’t exercised. All as a result of the surgery that left a 6″ scar wrapped halfway around my head!

Nathan and I have a running joke. Every time one of us gets a cut we fist bump each other and say, “man scar”. This started when he was a toddler and smacked into a piece of re-bar from sledding. It left a heck of a man scar on his face; he still has the scar today! Right before Debbie drove me to the hospital, I gave Nathan a fist bump and told him I was going to get a serious man scar. He smiled.

When the doctor came in, I joked with her saying “I’d like a man scar please. Not a wimpy incision but a real man scar”. She pulled her surgery pen out and sketched a line halfway around my neck. I smiled and said, “are you serious”. She said she was serious. Surgery was going to be nearly 3 hours!

They wheeled me into the operating room. I smugly said, “I don’t feel any anesthetic”. A minute later (it was nearly 3 hours) I opened my eyes.

The next few hours were a blur, but I remember only wanting to see my wife. She stood by my bed giving me ice as I moaned from the pain in my throat where they’d removed my tonsils.

I love you Debbie Stoddard. You are always by my side, no matter what. You have cared for me selflessly and been strong when I struggled with the pain over the last few days. I don’t know where I’d be without you. You are amazing. Thank you!!!!

This picture above shows my “Man Scar” a few hours after surgery. The red tube is my bodily fluids being sucked out.

As Bones would say, “Cutting him open with a 6″ opening and removing a chunk of Stoddard steak isn’t the answer”.

Unfortunately, Bones would have been right. Yesterday we finally received the pathology results. It turns out the “Stoddard steak” that was removed from my neck contained 3 lymph nodes. We knew one of the nodes was cancerous. They discovered another node was also cancerous, but the 3rd node was cancer free. The cancer had started to spread, and the biopsy of the Stoddard steak revealed this. Fortunately (or unfortunately) the biopsy of my tonsils and the samples from my tongue didn’t reveal any cancer.

What does this mean I anxiously asked the doctor on the phone? It’s good news, Damon. The prognosis for these situations is very good. Unfortunately, however, your treatment isn’t over. We’ll talk more about it on Thursday. For now, suffice it to say that you’ll need radiation of your mouth and throat areas.

But what will they radiate? If there is no cancer, why radiate? Medievalism as Bones would say. Unfortunately, that’s the state of our understanding of this type of cancer and the only known cures are akin to medievalism! The butcher knives weren’t enough to remove all the cancer so now we resort to burning hot coals!! Radiation, that is. Radiation that literally fries all the tissue it touches, much like a medieval torture chamber with burning coals applied to the interior of my mouth and throat. A torture that I’m guessing will last for 4 to 6 weeks.

OK…enough sarcasm. In all honesty, it’s true. Cancer treatment options are still very limited-butcher knives (surgery), poison (chemotherapy), and hot coals (radiation). But it’s the best we have, and I thank God for the doctors that found this and their wisdom for the best-known treatment available to man today. Cut out a piece of Stoddard Steak and fry all remaining tissue that could have been the source of the cancer in the lymph nodes.

My doctor tells me that cancer doesn’t originate in the lymph nodes, it jumps there from somewhere else. Either the throat or the tongue or the tonsils. Since they were unable to detect it in my throat or tonsils or tongue, they are left with no options except to believe that it is so microscopic in the tissues that they can’t detect it. To make sure it doesn’t grow, they’ll nuke the tissue and kill any cells that might have cancer. Unfortunately, they’ll also kill some other cells. Namely the cells that produce saliva and the cells that help me taste food.

Yesterday was a tough day to say the least. I didn’t know whether I should rejoice or cry. Rejoice because cancer is removed or cry because I’m about to undergo some major radiation? Being honest, yesterday was perhaps the hardest day that I can remember in a very long time. Let me take a minute to explain why it was so hard to try and pull all this together.

It boils down to 1 simple word. Fear. Yes, the same fear that I talked about in my last blog, and so exuberantly stated I wasn’t experiencing. But this time the fear is different than anything I’ve ever experienced. This time it wasn’t the fear of loss or the fear of emotional pain. I’ve been through those and I wrote about my journey in my first book. My wife reminded me last night what this fear was about.

THE FEAR OF PHYSICAL PAIN

She reminded me that I’ve never really experienced much physical pain, so this is going to be a battle unlike any I’ve faced. Truth be known, I have faced a little bit of physical pain. It’s been almost constant for the last 8 days. Not severe (at its worst it was a 6 on a scale of 1-10). But it’s been there for 8 days. Sometimes it goes away, and I feel normal. But I’m reminded of it when it’s time to eat (I’ve lost 5 pounds this week because it’s been so difficult to eat). I’m reminded of it when I talk. I’m reminded of it when I try to sleep (I’m a back sleeper but am unable to sleep on my back right now because when I do my throat doesn’t have sufficient room for me to breath and I begin to gag feeling like I’m about to suffocate). So, I sleep on my side, but every few hours I wake up (laying on my back) unable to breathe easily. I get up, drink my ice water, take some medicine, eliminate the water that has accumulated in my bladder, and lay back down on my side. A few hours later, the process begins again.

No, it hasn’t been awful. It’s been uncomfortable, and I’ve been excited that it was about to be over because I was healing. But then I got the call. As I processed it, I realized that what I’ve been going through the last 8 days will start all over again in a few weeks. Except this time, it won’t be over in 8 days. It might be over in 6-8 weeks. I don’t know for sure; I’ll find out tomorrow.

Yes, I’m experiencing fear of the impending physical pain. I held my son last night with tears in my eyes and I told him I was scared of the pain, but that I would be ok. I told him it was ok to have emotions as a boy and I showed him through my own tears that I was experiencing deep emotions. Lord, protect Nathan during this season. Let him learn lessons about you through me and his mom’s battles with cancer that will grow his faith and help him be a man who fully trusts you.

Yes, I’m experiencing fear of the impending physical pain. I held my daughter in my arms as she sobbed uncontrollably, afraid of her dad experiencing this pain. Worried that they wouldn’t get all the cancer and that I might die. I reassured her that I wasn’t going to die but that I was choosing to focus on all of the good versus the bad that could happen. In my fear I comforted her and showed her how I am choosing to handle a situation that is completely out of my control. Lord, protect Noelle during this season. Give her peace and comfort. Help her to learn from her mom and I how to relinquish control and trust you in the seasons of her life when things happen that are out of her control. Help her become a woman who fully trusts you.

Yes, I’m experiencing fear of the impending physical pain. I won’t be able to effectively coach my son’s football team and I likely won’t be able to go salmon fishing with him and my father in law.

CANCER SUCKS!

However, my treatment and prognosis for a successful recovery are much better than the alternative….

A mentor reminded me of all the people who go through what I’m going through and don’t have Jesus. WOW. Where would I be without my faith right now?

My wife reminded me of all the people that go through this and are all alone, without family. WOW. Where would I be without my family and friends right now?

My banker reminded me today of all the people who hear the news and have NOBODY to help. WOW.

Thank you, Jesus, for all the blessings you’ve bestowed upon me and my family.

Thank you that I have a family that loves me, that I have great medical insurance, that I have great doctors.

Thank you that my cancer was caught early, and that the Stoddard steak removed another lymph node with cancer.

Thank you that I have a wife who is caring for me and making sure that I am fed, and my medication is taken at the right time to minimize my pain. Thank you for her example of fully trusting and surrendering to you in her own battle with cancer and how she’s taught me to have faith in her own struggles with pain.

Thank you for my boss who texts me every couple of days and asks how I’m doing.

Thank you for my job that is paying for me to be off work and recover. Thank you for my medical benefits that are paying for the treatment.

Thank you for the men who laid hands on me and prayed before my surgery and for the men who stopped by and said hi to me.

Thank you for my counselor and friend who stopped right before surgery and gave me a flower and prayed over me.

Thank you for my home and my backyard and gas firepit where I can sit and be warm and feel the peace of God that transcends all opportunity.

Thank you for the opportunity to write about this and the opportunity to inspire other people who might be struggling through the platform you’ve given me to reach many people.

Thank you in advance for the lives that will be saved because they randomly read this blog and were inspired to have that lump checked.

Thank you for my wife whose best friend is alive because my wife shared her cancer story, and for her cancer (the same that I have) being cured, and thank you for her encouraging texts to my wife for me as I undergo the same treatment she did.

Thank you that you, Jesus, endured more physical pain than I will ever endure and because of it the sins of my past are completely wiped clean and I have more peace and joy than I ever deserved.

And Jesus, thank you in advance for this new thorn in my side called cancer. Thank you that my faith is re-ignited whenever I’m in pain and see the opportunity to use my pain not only for my personal growth but also for the growth of those who will one day be enduring the same hardship I am currently undergoing.

Thank you that my mom so many years ago taught me through her example to be thankful for everything through her daily journal writing. Thank you that she is in heaven with you and is no longer experiencing her pain.

When I heard the news yesterday, I had a choice to make? I could choose to focus on everything bad that will happen because of the radiation or focus on everything good that will come from it, and I allowed myself to focus on the fear for a short period of time. This fear paralyzed me.

Today, I choose faith. Even though Bones can’t put the magic gadget on my neck and instantly cure this cancer I still choose faith. I choose to be thankful and focus on everything good, right, lovely and pure….and because of it the peace of God is with me!

 

I Have Cancer-Part 3

Praise God! I got the news that my cancer has not spread and is limited to just my lymph node!

My treatment is very straightforward.  I’ll be having surgery on June 18 to remove the lymph node and all surrounding lymph nodes.  They will also remove my tonsils and take a biopsy from my tongue.

If they find cancer in my tonsils but not in my tongue, I might not need anymore treatment. However, if they don’t find cancer in my tonsils or tongue then I’ll likely have to have radiation treatment at least.

Praise God, I’m so thankful I can’t even explain it! Stay tuned, I’m going to share this journey with everyone in hopes that I can encourage others!

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