Category Archives: Cancer

Apathy or Action, Cancer, Psychological Safety

Psychological Safety and What I Learned In XBox Might Have Saved My Life from Cancer

1 Comment

Here’s the truth. If it weren’t for a peer who I felt psychologically safe with as well as the skills I learned as quality manager on Xbox 360….

I might be dead today.

At the very least, my quality of life would be dramatically worse than it is. Read on if you’re interested in the whole story…..

Five years ago, I felt a lump on my neck that turned out to be cancer. I just got the call from my doctor, I’m cancer free, and long term prognosis is very good. I’m virtually free of side effects, an outcome that she tells me is unheard of for this type of cancer. Today, I’m overwhelmed with gratitude as I reflect on how I got here.

Paralyzed with fear, I found myself unable to focus on work, but I also felt guilty about taking any more “sick time” from work. I had a co-worker, Erinn, who I fully trusted. I felt psychologically safe with her, so I walked to her office. The ensuing conversation may have saved my life……

“Do you have a second to talk? I’m struggling, I don’t feel like working and I don’t feel like I’m sick, so I don’t know what to do.” I said as I entered her office.

“Damon, you have cancer, you’re sick! Don’t feel guilty, take the time you need. Use your strengths, research it and figure out how to beat it!”

I quickly felt the stress leave my body, and my fear was quickly replaced with a desire to solve the biggest problem I’d faced in my life. I jumped in my car and drove to the Commons at Microsoft, a comfortable place to research. I grabbed a piece of carrot cake, knowing this might be one of the last times I would enjoy my favorite sweet, and I began researching.

I’ll never forget it. I found a presentation with a “Kaplan Meier” plot for patients experiencing the same type of cancer I had. There were 2 lines on the plot, one line for “known primary source” and another line for “unknown primary source.” I’m betting 99 out of 100 people wouldn’t know how to interpret this statistical plot. But I knew because I’d learned about this plot as the quality manager for Xbox 360.

My heart quickly began racing.

The plot indicated that I had a 50% chance of being dead in 2 years!

However, if they could find the cancer, I’d have a greater than 90% chance of being alive in 5 years!

Pick up a coin and flip it. The odds of it being “heads” were the same odds of me being alive today. This plot shows the 2 lines (I overlaid the explanations to simplify interpretation).

I vowed to never share this data with my wife or family, knowing the fear it would induce.

As dug further, I discovered TORS (Trans Oral Robotic Surgery). This relatively unheard of technique was very successful at finding Cancer of Unknown Primary source.

The raw data was at the end of the article. I went back to work and imported the raw data into Power BI and within an hour built a report that convicted me that my situation wasn’t as dire as I thought. The report revealed that 72.3% of the time TORS discovered the source of cancer! Furthermore, it indicated that 50% of the time the source was at the base of the tongue, an area that only TORS could locate and remove. The report showed that 89% of the population in the study were males, and the median age was 56. I was 52 and literally the identical characteristics of the candidates in the study! Finally, the median tumor size was .9 cm (a little more than ¼”)! No wonder the blind biopsy done during my original surgery didn’t locate anything!

My skills in building Power BI reports and analyzing data brought me incredible hope.

I wasn’t going to die in 2 years. I was going to research TORS, have the surgery, find the cancer and remove it!

A closer look at the data revealed that the University of Washington had more than twice the patients in the study! UW was literally 20 minutes from my house!!

My visit to the radiation oncologist didn’t go as well as expected. She wasn’t as versed in the studies and data that I’d discovered, and recommended we proceed with the previously prescribed radiation treatment.

I was livid. I told her I’d seen the data. My chances of survival were 50% in 2 years, and I wasn’t ok with that. She indicated that the odds were significantly better for me than that. When I asked her for the source of her data she couldn’t recall.

“With all due respect, I need to pursue this path. Can you please refer me to the University of Washington Head and Neck Cancer Center” I requested.

2 minutes later she returned with a referral, but warned me that they were busy and it might be weeks before I heard back. Those weeks might result in the cancer growing and she wanted to make sure I was sure.

“I’m 100% sure I want to go see them” I said.

I went home and anxiously awaited the call. It didn’t come. So, I did what I’d learned to do so many times in my career. I located the phone number for the UW and I called! My first call was a dead end. They had no records of my referral.

I took a different tactic on my second call. “Can you please put me through to Dr. H’s office?” I’d researched TORS at the UW and discovered that Dr. H was the resident expert.

“Here’s the number Mr. Stoddard” they said.

“Thank you, you might have saved my life” I responded.

The next morning, I heard back from Dr. H’s assistant. There were no appointments for weeks. I didn’t give up. I shared the research I’d done, and I shared how I’d identified Dr. H.

“Just a moment, Mr. Stoddard” his assistant said.

A few minutes later she said “Dr. H. has tumor board this afternoon. He’d like to see your case.”

“WAHOO!!!! Thank you, thank you, thank you!!!” I said.

“We’ll call you after tumor board. Let’s schedule an appointment a few weeks out” she said.

I was a bit disheartened that I’d have to wait to talk to Dr. H., but I was elated at the opportunity.

The next morning my phone rang. “Mr. Stoddard, we’ve had a cancellation. How quickly can you be here?”

“I’ll be there in 30 minutes” I excitedly said, my heart racing out of my chest.

An hour later I was talking to one of the pioneers of Trans Oral Robotic Surgery, Dr. H. He shared that I had a 50/50 chance of finding the tumor in my tongue and that there would be almost no long term side effects. But if they found it, my long term prognosis would be very very good, and I wouldn’t experience many of the major side effects.

“Let’s do it” I said.

2 weeks later as I entered the operating room I confidently boasted

You are going to find the cancer in my tongue and you are going to remove it!

I was right. They found the cancer, just a few millimeters from the needle biopsy, and they removed the margins! I was cancer free!!!

I shared the news later that day in a Facebook Live video.

But my story wasn’t over…

I re-learned another valuable lesson, the same lesson I’d learned years earlier as the quality manager for Xbox. We’d spent months pulling the data together trying to understand what was driving the 3 red light failures, but weren’t any closer. I had a few friends at SAS, including the founder and president of JMP, the statistical software that I used for most of my career to understand and solve significant problems. I was giving a keynote address at one of their conferences and decided to take an extra day to fly up to their headquarters to get their help on how to statistically analyze the data from the Xbox red light failures.

“That’s easy. Dr. Meeker, the world’s best in reliability, talks about this in his book. He recommends using Kaplan-Meier. We have this built into the JMP software, let me show you how to use it.” Brad said in his office.

A few short hours later I was on a plane, analyzing the failure data using this technique. Over the coming weeks we uncovered incredible insights and quickly improved the quality problems.

All because I asked for help from one of the best in the world….

I originally wanted to do my radiation treatment close to home to avoid the extra 20-minute commute. After talking with the radiation oncologist, however, I quickly changed my mind. She wasn’t going to change her protocol for treatment even though they’d identified and removed the cancer. I would lose my taste buds, my saliva, and would only recover about 70%. I’d no longer taste sweets, I’d struggle with dry mouth, and I’d have to take extra care of my teeth to avoid any potential of potentially life threatening cavities.

I was livid. It made no sense. The cancer that was once unknown but now removed didn’t change my treatment at all?

I respectfully declined her treatment plan and returned to the UW to be treated by one of the nation’s best, Dr. P.

My radiation treatment would be significantly less severe than if they hadn’t discovered and removed the cancer. The treatment would be very painful, but the UW dropout rate was <5% versus nearly 30% for non-University programs. I would lose my sense of taste for a short period of time, but a few months later I’d be at 90%, with only a slight degradation in my ability to taste sweets. My chances of survival were significantly better than 90% because they’d found and removed the cancer.

When I asked what his recommendation might have been if they hadn’t found the cancer, he said they would have had to dramatically increase the radiation dose and my quality of life would have been dramatically worse.

My wife and I were elated. We made a fact-based decision and chose the expert for my radiation treatment.

I was warned, the next 6 weeks would be very difficult.

I went to the UW every weekday for the next 6 weeks. My head was strapped to the table, and my head and neck were radiated to kill any residual cancer cells.

The promise of great pain never came to pass. I continued riding my bike almost every day, believing that the extreme exercise brought life giving blood to the areas the radiation was killing.

I decided to celebrate my last day of radiation treatment by riding my bike 15 miles from my house in Woodinville to the UW. I arrived at the UW on my bike, tears flowing down my face. Not only had I beaten cancer, but I was healthy and strong. Dr. H. saw me and said he’d never seen a patient fare as well as I had through radiation treatment.

That was almost 5 years ago. I’m still cancer free, and my quality of life is almost the same as before cancer. I’m filled with gratitude and left to wonder:

Where would I be if:

  • I didn’t have a co-worker I felt psychologically safe with when I was trapped in fear?

  • I hadn’t decided to own my own treatment?

  • I hadn’t learned the power of data driven decisions years ago as quality manager of Xbox 360, after a co-worker saw my passion for data and problem solving?

  • I hadn’t taken a growth mindset when I feared the worst from cancer and began researching options?

  • I hadn’t intentionally built my professional network to include world experts in statistics?

  • I didn’t know how to interpret p values on Kaplan Meier plots, learned while being a member of a team of brilliant co-workers at Microsoft?

  • I hadn’t taken the time to learn Power BI, then applied those skills for an extra hour to build that Power BI report that revealed my path to recovery?

  • I hadn’t continued to reference the data, giving me the credibility and confidence to challenge the doctors and ultimately leading me to the best possible treatment at UW?

  • I didn’t have a manager that cared about me as a person and didn’t let me return to work full-time, even though I felt fine physically?

I might be dead

Sometimes we get so caught up in the busyness of email, chats, meetings, and our computer screen that we forget how important it is to stop, reflect, and be grateful for everything we have.

I’m not dead. I’m alive because of psychological safety and the skills I learned on Xbox 360

I want to challenge you to take some time in the next few days and reflect on what you are grateful for. I promise you it will have a profoundly positive impact on your own well-being in a time that it is desperately needed.

It all started with psychological safety. I had a co-worker I felt safe talking to when I was trapped in fear. How about you? Do you have any co-workers you feel psychologically safe with? Would you be psychologically safe if someone came to you with a similar issue?

Apathy or Action, Bipolar, Cancer, Family, Microsoft, Pain Drives Change, Personal Growth

Thank you, Microsoft, and Goodbye…

5 Comments

This is going to be tough. I’ve been putting it off as long as I could, but this morning the tears started flowing and I knew it was time to write my goodbye letter.

I’m sitting in the Commons at Microsoft, the same place I discovered a procedure that likely saved my life from cancer 4 years ago. If it weren’t for the relationships, resources, and benefits from Microsoft I might be dead, and I’d certainly not have the life I never dreamed possible.

I’m overwhelmed with gratitude for my 20 years, and I want to express that gratitude in no uncertain terms. Overcoming bipolar, a child with addiction, my wife’s cancer twice, my first layoff in 2015 and the resultant book and coaching organization that’s positively impacted hundreds of lives, overcoming cancer myself and writing my second book, and finally the discovery of psychological safety that has impacted hundreds of teams at Microsoft and countless lives across the world….these are the most significant events that I can thank Microsoft for. Thank you, Microsoft!

When people hear that I was impacted by the layoffs, they always say “I’m sorry”. I thank them for their sentiment, but quickly let them know there’s no reason to be sorry. I’ve been blessed beyond my wildest dreams through the experience, and I’m overwhelmed with gratitude. Gratitude is my deepest emotion since hearing the news, and with every passing day I feel more grateful. I still believe Microsoft is the best company on the planet to work for, and I’m eternally grateful for the last 20 years.

I’d like to share a bit of my journey with Microsoft here, hopefully it will inspire you to take a moment and reflect on the blessings in your own life, particularly in the darkest moments. I’ve spoken with many of you, and you’ve shared how devastating it is to hear of me and your peers losing jobs. I want to encourage you to shift your focus to thankfulness for what you still have at and because of Microsoft.

I started Microsoft in 2003 before I married Debbie. Neither of us could imagine the blessings we would experience because of Microsoft. Microsoft and each of my managers have walked beside us and supported us in the most difficult seasons of our lives. The experiences and learning have shaped me and everyone I interact with. The opportunities and learnings will open doors for me to fulfill my true calling in life for the rest of my life. Thank you, thank you, thank you.

  • I survived the dark winter of 2007 when I was so depressed that I couldn’t get out of bed to go to work because of my bipolar illness. In the ensuing years, Microsoft’s health benefits inspired me to begin exercising regularly, a habit I’ve continued for 15 years that has fully stabilized my bipolar and provided the energy to carry me through the ups and downs of life.
  • I survived the darkest days of my life when my daughter struggled with addiction. The overwhelming support from my manager, Jesse, and the benefits enabled her to fully overcome her addiction.
    • Years later, I received the same level of support to help her diagnose and stabilize from her own diagnosis with bipolar. Her life is completely different today and she’s studying to be a therapist because Microsoft gave me the time to support her in her darkest season and provided the benefits to get her the help she needed.
  • We survived my wife’s first bout with cancer in 2013. The world class benefits paid for the treatment she needed. Thanks to my manager, Carol, for providing the support and flexibility we needed so I could care for her and our children when needed.
  • We survived a layoff in 2015. The generous severance I took 5 months off to write my first book, Pain Drives Change, in 45 days. These 5 months allowed me to spend time with my mom before she died just 2 weeks after I returned to Microsoft in December 2015. Thank you, Nathalie, and Sean, for creating the role that I’ve been blessed with over the last 7 years.
  • We survived my wife’s 2nd bout with cancer in 2018. This time Microsoft’s new family leave benefit allowed me 6 full weeks off to fully care for her and the children. Thank you, Sean, for your support during this season.
  • We survived my bout with cancer in 2019.  I had no idea that the data analysis skills I learned in 2008 as the Xbox 360 Quality Manger would help me analyze the research and discover the cure to my cancer. I might be dead today if I didn’t have my team member and future manager, Erinn, who I felt safe enough with to share my cancer fears with, and her ensuing advice to take time for myself to research this cancer.

I wrote my second book, Apathy or Action, as I went through cancer. I had no idea that this book would inspire so many, including more than 15 people who are writing and publishing their own books that are inspiring others. All because of the opportunity Microsoft availed me to offer coaching through MS Auction!

When I returned to work in 2020 after surviving cancer, I worked with my manager, Sean, to pivot my work and align it with the strengths he saw in me. Thank you, Sean, for the opportunity to study productivity and begin coaching teams and individuals through my learnings. This pivot has resulted in the most fulfilling 3 years of my entire career, a season of significance where I added value to countless lives.

Thank you, Erinn for casting the vision that’s being realized, that I would be known as the psychological safety expert within Microsoft, and that I would speak and inspire people around the world.

My discovery and understanding of psychological safety has literally changed my life and the lives of countless people. It’s changed my marriage and my relationships with my kids. It’s changed the lives of hundreds of teams in Microsoft and hundreds of thousands of teams in the 62,000 organizations that are using the tooling I built with Engin. It’s changed hundreds of men that I’ve coached to break generational curses in my coaching organization, Change YOUniversity, creating a safe space to be vulnerable and heal from childhood trauma.

As I began speaking across Microsoft and hearing how my story, psychological safety, and the process I developed to improve it inspired others, I knew I’d been blessed with experiences, information, and tooling that could literally improve every person on the planet. My work quickly transformed from work to a calling.

A friend said it best. This layoff isn’t a setback, it’s a set-up. I’m more excited about my future than ever, a future where I’ll fulfill my true calling, and an opportunity to reach countless more people than if I’d remained employed by Microsoft.

Thank you, Microsoft. Thank you, Russ, Maren, Mark, Paul, Jesse, Carol, Paul, Sean, Erinn, Dawn, and Myron, for being managers I could fully trust and for enabling me to apply my strengths to help countless people. Thank you, Kristen, for the world-class benefits and your ongoing encouragement to me. Thank you, Nathalie, for allowing me to be a part of your team for 7 incredible years. Most of all, thank you to all my co-workers for your friendship and ongoing encouragement to use the gifts God’s given me to inspire others. I’ll miss the comradery and relationships the most.

Please connect with me on LinkedIn, and if I’ve added any value to your life through the years, please share this post to your network on LinkedIn. I’d love to have you join my group on LinkedIn, Thriving in Work and Life and we’ll build a community to inspire each other. Finally, if you’d like to hear about my new books on psychological safety at work and another on overcoming trauma when then come out, please sign up here.

Thank you, Microsoft, and goodbye.

Damon

Apathy or Action, Cancer

I’m Cancer Free!

1 Comment

Wahoo!

Three months ago I rode my bike to the University of Washington for my final radiation treatment. Yeah, I know, people that go through cancer treatment don’t typically ride their bikes 15 miles for their last treatment. But I had to go for a bike ride, to feel the sun on my face and listen to the worship music that fed my soul and helped me connect with my creator. Trust me, I connected with Him on this ride. I listened to Praise You in the Storm by Casting Crowns, the song that carried me through some of the most challenging times of my life and the same song that I titled the first chapter of my new book after. My choice to praise Him in the storm brought me peace when nothing else would. And I listened to In Your Presence by Jeremy Camp, the same song that had me weeping like a baby as I waited to hear the extent of my cancer and wrote about it in another chapter of my book. As I rode my bike that day I looked up to see His majestic creation of Lake Washington and Mount Rainier in the distance and I raised my hands to the heavens thanking Him that my cancer was treated and that I was alive. As I biked closer to the UW I heard the final song All Creatures of Our God and King by The David Crowder Band-Alleluia, alleluia, alleluia. I’m alive! I’m alive! I’m alive I thought as the tears continued to flow.

I had my final treatment listening to the Pandora radio station that brought me peace over the previous 6 weeks and 29 treatments. Coincidentally, the last song was the first song, Praise You in the Storm. But it wasn’t a coincidence. He orchestrated the perfect song to place the other bookend on my cancer treatment that was now complete.

I exited the radiation room and hugged all the nurses that had lifted my spirits and encouraged me through the journey. Then I emerged in the waiting room to my family waiting for me. I rang the bell and celebrated. I was done with the radiation treatment and my body could begin the slow journey of returning to its normal state.

My body began healing but my emotions needed additional time to heal. I will forever be grateful to Microsoft and the benefits that allowed me to take additional time to heal both physically and emotionally.

Last week I went back to the UW for my 3-month check-up. The CT scan showed no signs of concern. For the first time I saw the area of my tongue that was surgically removed in August along with the tiny cancer tumor. They numbed my nose and throat and stuffed a high definition camera in through my nose to reveal there were no signs of cancer. The only thing it revealed was a swollen epiglottis explaining why I still struggle with swallowing occasionally and why my voice is occasionally different.

I walked back and high fived the nurses letting them know that I had stabilized my weight since my last treatment, thanking them for sternly telling me that I needed to stop losing weight.

And then I walked out the door and drove home to celebrate with my family.

Wahoo! I’m cancer free!!!

Thank you Jesus!

P.S. My new book about my journey with cancer will be available in a few days. You can order a copy below.

Apathy or Action, Bipolar, Cancer, Lessons learned, Pain Drives Change, Personal Growth

I Have Cancer Part 13-I Can’t

9/20/2019

I just finished my 8th radiation treatment. That puts me at 26.7% complete. This is going to sound crazy, but stick with me….

I LOVE my daily dose of radiation!


Don’t get me wrong, I’m not looking forward to the pain, loss of taste, loss of saliva, and tiredness they are promising me. But I love my daily visits to UW for my radiation treatment.

Crazy, I know…and a lot different than my attitude a little less than 2 weeks ago where I was in denial and didn’t want to do it.

What changed? Simple. My attitude and outlook. I chose action in lieu of my previous apathetic attitude toward radiation. Nothing else changed. Just my attitude and the resultant actions that followed.

What triggered this change? Pain. But not the pain of radiation treatment or cancer, it was the severe and debilitating pain I experienced more than 10 years ago. This pain drove me to change, and I’m still reaping the benefits of that changed today.

In order to fully understand why I love my radiation treatments I’ll need to go back to that time when I was in extreme and debilitating pain.

It January 17, 2007. The middle of “winter” in Seattle. Weeks of grey rainy weather and no sign of the sun was getting me down. I called my wife on the phone crying my eyes out. I was depressed and couldn’t make it through the day. I was hopeless and miserable.

I’m bipolar and I was experiencing the depressive phase of manic depression. I’d been here before, but this time was different. I’d decided to stop taking my medication because it was killing my emotions (I felt like a zombie) and it had contributed to my massive weight gain (I was nearly 260 pounds with my ideal adult weight being 205 pounds). Stopping the medication helped me feel again, I certainly could feel my emotions now as I sobbed on the phone with my wife.

2 days later I wrote in my journal, my depression had reached a point of debilitation.

“Stayed home from work, couldn’t get energy to get up”

 

I laid on the couch all morning with tears in my eyes being overwhelmed with fear, anxiety, and depression. I felt hopeless. In my pain I was forced to change. I called a friend and he encouraged me to go back on the medication. Reluctantly, I agreed.

 

My moods started to improve. Over the next few months I started gathering clues about the cause of my depression. Here are a few excerpts from my journal:

 

January 23

…. Feeling very sad and disheartened afterward. What is my future???

January 24

Moods fluctuate considerably within a day. Realized that I don’t have a VISION…so nothing pulls me forward

January 27

Feeling VERY sleepy and lethargic. Related to getting up at 5:30?

January 30

3rd day in a row feeling good, wow! 10 minutes of sun lamp today, too..

February 5

Feeling more lethargic today. It is cloudy and gloomy out. Work is slow today as well…is that a clue?

February 6

Exercised at lunch yesterday, felt good.

February 16

Worked at home today. Felt good because I got some results (and watched a guy I’m mentoring get results).

June 7

Stopped taking Lexapro because feeling WAY too stimulated.

July 11

AWESOME Team Offsite. Developing leaders makes me PERFECTLY congruent

Aug 15

Back to work after long vacation at Lake Roosevelt. Absolutely Incredible!

 

The “factors” that seemed to contribute to my depression (and/or help remove the depression)

  • Having a vision for my future
  • Not having adequate sleep
  • Sunlight
  • Exercise
  • Mentoring/coaching
  • Developing leaders
  • Family vacation time

Unfortunately, a few months later the weather began to turn, and I began feeling depressed again.

Before I share the rest of the story, I have a confession to make. I started writing this chapter almost 2 weeks ago and I haven’t been able to finish it because I felt like a hypocrite writing about feeling AWESOME when it quickly became a lie. I haven’t been feeling awesome, I’ve been tired and consumed with something I didn’t expect to happen. My body started to itch everywhere. I thought it was associated with the radiation, but the doctors swear it isn’t. It got so bad that I woke up in the middle of the night scratching, but I found no relief. I called the dermatologist and unfortunately had to wait almost a week before seeing them. The itching became worse and worse. I became more and more frustrated and my calves were covered in sores where I’d scratched so much I broke through the skin.

And I’m writing a chapter about how great I feel? I simply couldn’t do it. It was a lie.

When I finally met the dermatologist, I pleaded with her to do anything to stop the itching. She looked at my body and boldly declared “I don’t know what is causing this.” She proceeded to take a biopsy declaring “I doubt it will reveal anything, but we have to try.” She then decided to throw everything at my itching to stop it. She prescribed creams and anti-itch pills and allergy medicine and moisturizers and….

But it didn’t work. I woke up in the middle of the night and I itched so bad that I almost woke my wife up to take me to the hospital.

A few days later I was watching my daughter’s volleyball game and my arms began breaking out in little bumps everywhere. I quickly drove to the dermatologist’s office only to find that they were closed. I called to talk with the on-call physician and got a voicemail.

The next morning, they called me back. “I’m sorry Mr. Stoddard, but there isn’t anything more we can do. Are you showering regularly?”

Yes, I said!

“You might want to cut back on showers and make sure they are cold to lukewarm and try not to use much soap.”

“Oh, and did she tell you this would go on for weeks before it might clear up?”

“No, she didn’t. Thank you for the call.”

Weeks? I had to continue to deal with this itching for weeks? My spirits plummeted. Here I am going through radiation treatments for cancer and now I have to go through weeks of itching so badly that I am scratching through the skin?

Proverbs 13:12

Hope deferred makes the heart sick, but desire fulfilled is a tree of life

I was crushed. I became cynical and started snapping at my wife when she tried to have a conversation with me. My heart was sick.

I had a choice. I could dwell in my misery or I could accept it. I’m not sure when it happened, but I accepted it. My itchy skin was 100% out of my control. The specialists were doing all they could. I accepted it.

I continued doing everything I could to take care of myself making sure I filled my time with things that give me energy and remove things that don’t.

I had dinner with my friend and inspiration who is going through cancer that may be terminal. I rode my bike to and from work. I listened to worship music in my truck. I spent evenings coaching my junior football players. I spent an evening in the rain with my family watching our high school football team destroy their opponents. I went to the Casting Crowns concert with my family and worshipped my God who gives and takes away. I developed a program to help my coaches in Change YOUniversity grow to the next level. I spent time at my vacation home. I celebrated my being halfway done with radiation treatments by biking 20 miles to my 15th treatment in the sun along Lake Washington.

And somehow the itching doesn’t consume me anymore. Maybe it’s the medicine and the creams. Or maybe it’s a result of continuing to love myself by taking care of myself that has almost eliminated my skin itching.

I just returned from the dermatologist. The biopsy was inconclusive. It might be weeks before my itching is completely gone. But it doesn’t matter. I’ve accepted that I’ll itch and I’ve accepted that we will never know what caused the itching. But it doesn’t matter….

I just completed my 16th radiation treatment and I feel FANTASTIC. My energy is through the roof, the pain from the radiation only reveals itself when I swallow, and it’s not extreme. I’ve lost my sense of taste and about half my saliva. But I feel FANTASTIC.

Why do I feel fantastic? Let’s go back in time to about 10 years ago when I learned a powerful lesson on life

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

Deming

Fall was coming and I began to feel very anxious that once again I was entering deep depression, the same depression that left me on the couch unable to get up and go to work less than a year earlier.

A few entries in my journal revealed some more clues as to why I was feeling depressed.

9/18/2007

Wellbutrin…started today..

10/03/2007

Woke up this morning and almost in tears for no reason…

10/06/2007

Going to start Lexapro today

10/08/2007

Debbie and I decided that the Lexapro isn’t going to work…just makes me too distant. We’re going to try to stabilize the Wellbutrin by going to SR vs. XL.

 

Also, I’m going to stop being a victim…take walks in the morning, eat right, exercise, change my thought processes.

10/11/2007

Feeling REALLY sad and empty this morning….despair, no hope for the future

10/17/2007

Woke up anxious, called Dad and started to cry. Called Don and started to cry. Is this a spiritual battle?

10/18/2007

This is a spiritual battle, and I’m going to fight it with spiritual weapons! Tears again this morning. Began running in the mornings today.

10/19/2007

Feel better today than I have in a long time. Took 150 Welbutrin XL last night and 150 this morning. Attacking this like a spiritual battle. With HIM I will emerge victorious!

    

I’d decided to try a new medication to help with my depression, Wellbutrin. Unfortunately, the Wellbutrin didn’t help my depression, so I started taking my old medication, Lexapro. A few days later I realized why I stopped taking the Lexapro. It numbed my emotions and it had a very negative impact on or relationship.

Debbie and I had the talk that would change my life and the lives of all the people I influence.

Apathy would say that I was a victim of bipolar and me and my family would suffer the consequences because of this biological condition. After all, I had a good excuse. I was born with bipolar and it was out of my control.

Action would say that I may not have control over my biological conditions, but I have complete control over my actions to minimize the impact.

Apathy or Action

I had a tough decision to make. Was I going to choose to remain apathetic about my condition or was I going to stop being a victim and take action? Pain drives change and I was suffering enormous emotional pain through my depression and anxiety.

I chose action.

“I’m going to stop being a victim…take walks in the morning, eat right, exercise, change my thought processes.”

The action I took started with a decision. A decision to start taking care of myself. A decision to start loving myself.

I wish I could say things got better after that decision. They didn’t. In fact only 3 days later I woke up and wrote “Feeling sad and empty this morning….despair, no hope for the future.”

A week later nothing had changed. I was in tears and feeling helpless, full of fear and all alone. I called my dad crying my eyes out.

Then I called my pastor, my friend, and the man who has made a bigger impact on my life than anyone else.

“Don, I can’t stop crying. I’m depressed, full of anxiety and nothing is helping.”

“Damon, I think it’s a spiritual battle and you need to attack it spiritually. Read the book ‘Waking the Dead’, spend time daily in the Bible, pray, and sing your favorite worship music.

The next morning was different. I woke up in tears again, but this time I wasn’t a victim to my tears. I took action. I went for a run (well, actually it was a walk with a short jog in the middle) and during this run I listened to my favorite worship music (very loud) and I verbally spoke a few of my favorite scriptures out loud.

2 Timothy 1:7

“For God has not given me a spirit of fear, but of power and love and sound mind”

Wow, that felt good. So, I said it again, this time louder.

“For God has not given me a spirit of fear, but of power and love and sound mind”

It was as if these words penetrated the fear and the anxiety and depression lifted. I stopped feeling like a victim and started feeling hope that I’d be victorious. So I said it again, this time I said it like I believed it!

“For God has not given me a spirit of fear, but of power and love and sound mind”

The next morning I felt better than I had in a long time. My apathy was gone and now I was taking action.

“Attacking this like a spiritual battle. With HIM I will emerge victorious!”

The next morning I continued my routine and wrote in my journal “Feel Good”. And the next morning I did the same and wrote in my journal “Feel Good”. And the next and the next and the next…..

Don was right. It was a spiritual battle and for the first time in 40 years I began winning the battle with my new spiritual weapons of scripture, worship music, time in nature, and taking care of my body by running!!

But God was just getting started with my transformation. That weekend I attended a men’s conference. I cried on the way to the conference, but felt incredibly refreshed on the drive home. God gave me a vision for the purpose of my life at that conference. A vision that ignited a deep passion inside of me. A vision that would utilize everything I’d gone through for my entire life to benefit others. He gave me a vision for developing men.

Proverbs 29:18

“Without a vision the people perish”

This new vision for my life inspired me. I no longer struggled to get out of bed in the morning but began looking forward to my time in the morning to worship, exercise, and be in nature. To nurture the vision He’d given me while I was in the wilderness.

A month later I came across another scripture that explained where I was and where I’d be going.

Jeremiah 17:7-9

“Blessed is the man who trusts in the LORD And whose trust is the LORD. “For he will be like a tree planted by the water, That extends its roots by a stream And will not fear when the heat comes; But its leaves will be green, And it will not be anxious in a year of drought Nor cease to yield fruit.”

I was learning how to trust in the Lord. I was building deep roots. He was preparing me for the heat that would come into my life over the coming years, and He was showing me how not to be anxious in this heat and continue bearing fruit in my life.

12/22/2007

Sun lamp in the morning. I like how it makes me feel!

1/3/2008

Started training for a 5k today!

1/9/2008

Sunlamp or running or Wellbutrin are having a consistent effect on my attitude/moods

4/30/2008

Great meeting with my mentor. He pointed out that others are noticing I’m “changing” (e.g. considering others’ needs before my own). God spoke to me in this moment..

6/02/2008

Good weekend. Been feeling pretty good for a long time

 

In the next few months my relationship with Christ grew stronger than it had ever been. I set my alarm for 6:30 a.m. and every morning I got up. I stopped walking outside in the mornings because of the weather but I started going to my chair in the living room. I discovered that I also suffered with S.A.D. (Seasonal Affective Disorder) and that using a sunlamp in the morning had the same impact on me that the sun did. I sat in front of the sunlamp, listened to worship music, read my Bible and my soul was replenished.

A few months earlier I was in tears in the morning. Now I couldn’t wait to get out of bed and nourish my soul!

I continued running and set a goal to run my first 5k. I began running 3-5 times per week and discovered that I always had incredible energy after my runs. I completed my first 5k right after my son, Nathan was born!

Don and I had breakfast a few months later. He shared that the changes in me were obvious. Many people commented to him that I was changing. He shared that I was no longer selfish but becoming selfless. I was putting others needs in front of my own and they were noticing it.

On June 2, 2008 I wrote in my journal:

“Good weekend. Been feeling pretty good for a long time.”

I changed my system and it changed the results in my life. I chose action over apathy. I chose not to be a victim and emerged victorious.

These lessons carried me through my daughter’s struggles with addiction. They carried me through my wife’s battle with cancer. They carried me through my time of being laid off from Microsoft. They carried me through my mother’s sickness and eventual death. They carried me through my wife’s 2nd bout with cancer and they are carrying me through my own bout with cancer.

On October 3, 2007 I was entering severe depression. I woke up with tears in my eyes. That was exactly 12 years ago. I’m writing this on October 3, 2019. My mood swings from bipolar are 100% gone. I have never experienced depression since. I have tons of energy and I’m living the life of my dreams. I’m on my 17th day of radiation treatment and I feel better than the day I started treatment. I feel the sun on my back and I’ve decided that I’m going to bike 22 miles to radiation treatment again today. The doctors tell me that the next 4 weeks are going to be very difficult. You might say I’m entering a season of drought. But I am not anxious. I trust in the Lord. He has carried me before and He will carry me during this season as well.

Thank you Jesus for the lessons you taught me in my pain 12 years ago. Thank you that you didn’t remove my pain until I learned the lessons. Thank you that you helped me turn these lessons into habits, habits that carried me so many times and will carry me in the future. Thank you for the fruit from these lessons. Thank you for the vision that is becoming a reality, the vision of developing men. Thank you for the gift of writing. Thank you for replenishing my soul while I worship you on my bike rides in the sun listening to my favorite music.

And thank you for the cancer that was in my body a few months ago and will never return. If I hadn’t had that cancer I wouldn’t have written this book. Jesus I pray that my experiences will bring glory to you and positively influence those who I influence.

Amen

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.


Loading…
Apathy or Action, Cancer

I Have Cancer Part 12-Denial

5 Comments

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.


Loading…
Apathy or Action, Cancer, Family, Pain Drives Change

I Have Cancer Part 11-The Final Treatment Plan

6 Comments

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.


Loading…
Cancer, Pain Drives Change

I Have Cancer Part 10-The Results are In!

8 Comments

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.

Cancer

I Have Cancer Part 8: Wahoo!!

3 Comments

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.

Cancer, Pain Drives Change

I have Cancer Part 7: Carpe Data!

1 Comment

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.

Cancer, Pain Drives Change

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

2 Comments

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’.