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.