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’.