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.