My Cancer Journey

I was officially diagnosed with stage 1 osteosarcoma in the right cheek of my face in December 2018. I was speaking with my ENT surgeon at a post-surgical follow-up when he gave the definitive news that it was, in fact, cancer. 

My journey begins during the summer of 2018 when I noticed what I thought was swelling in the roof of my mouth along the molars of the back of my right side. Being a healthy, athletic, and active 34-year-old man, I didn’t think much of it. I researched home remedies to reduce this ‘swelling’, but nothing worked. Later on I began to experience some pain in that area from time to time. In August I had my regular dentist cleaning. They ask you the typical questions of ‘Is anything bothering you?’ I brought up the swelling and asked them to investigate that specifically. When reviewing my x-ray images, the dentist looked confused and stated: ‘You have no bone.’ 

This was one of the most surreal feelings I’ve ever experienced as someone is telling you something that you definitively know is not true. He showed in the image the difference between the dense, strong bone on the left side of my face compared with the weak and spongy tissue of the right. He stated that the teeth of the upper left side of my mouth were only being held in by the soft gum tissue due to the health of my oral hygiene. Unable to provide any answers, I was referred to the closest periodontist. I was able to get an appointment that same morning and more images were taken. After reviewing the images, he stated: ‘I have good news! Its not cancer.’ The mention of cancer was shocking even if he was saying it’s something I didn’t have. The mention of the word cancer was enough to send a chill through me. The periodontist’s best guess was a benign tumor which I would need to see an oral surgeon for further examination. The earliest oral surgeon appointment was two weeks away, plenty of time to let my thoughts and emotions spiral out of control with worst case scenarios. I began to research all different types of benign tumors of facial bone and found very few results that seemed similar to what I thought I had. 

Finally, two weeks go by and I’m in the appointment with the oral surgeon. Another x-ray taken and a request for a CT scan was the next move. A CT scan was taken and a follow-up to review the images and radiology report was scheduled quickly. The CT scan revealed a mass integrated along several teeth in my right cheek and sharing space with several nerves, sinuses, and vascular tissue. The radiology report classified the mass as ‘almost certainly malignant’. The oral surgeon laid out the next steps: a biopsy and a referral to the ENT department at Shands Hospital, part of the University of Florida Health System in Gainesville, Florida. 

I took the next day off needing to process everything that had transpired over the previous month. Up until that point the information I had was not definitive, and I had not shared it with many people. It was time to let people close to me know. I called my parents first. We did not speak on the phone often so making a call in the middle of a work afternoon was a very rare occasion. How do you tell your parents there is a very real chance you have ‘almost certainly’ cancer? I tried to be very matter of fact, but as the words were coming out of my mouth I began to break down into tears. My parents tried to remain calm as they were trying to confirm what they thought they heard. After the emotions settled, I was able to explain what I knew and the next steps. A few minutes later I was sending texts to my closest friends when I got a response back from my good buddy, Rob. “Can I call you?” I will remember that conversation forever. Rob asked, “Can I pray with you?”. What I heard next were some of the most passionate pleas to God to love and protect me. Rob implored, “Its not gonna end like this, Scott.”

Early next week was the first actual action of my journey, the biopsy. I return back to the oral surgeon’s office bright and early not knowing what to expect. What happened next started out something like getting a tooth filled. Local anesthesia of the roof of my mouth followed by what felt like the scraping of concrete from under the gums of my mouth. 45 minutes later the oral surgeon has his samples: several small pieces of bone fragments partially tinted red with blood. I was free to go, but as I stood up I almost immediately fell, clinging to the wall to prevent hitting the ground. My body was in shock with what had just happened. The sample was sent to the pathology department at UF Health where I was also being referred to the Ear, Nose and Throat surgeon. 

The following week I showed up to the ENT clinic at UF Health again not knowing what to expect. My Mom, Dad, sister, surgeon, his fellow and 3 other medical students surround me in a small examining room. A brief examination is followed by a series of questions then images are again reviewed. 

The conclusion was that the mass must come out whether it is cancerous or benign. The surgery would remove the tumor as well as several teeth, including my two front teeth, and skin from the maxilla. The area the tumor occupied would be replaced with a bone graft from the fibula of my left leg. The goal of using the fibula would allow me to have dental implants installed to replace the teeth that were embedded in the removed tumor. This sounded like the best option as it would allow my face to remain as close to normal as possible although my leg would require extensive physical therapy and there was no guarantee of physical function afterwards. Being a fit and active person, this was another big blow to accept, but the decision was an easy one as the desire for normal looking teeth and face was supremely important.

The reality started to set in: major surgery to my face and left leg with no guarantee of success or what I would even look like. That didn’t include any assumptions if it was a cancerous mass. It was a quiet ride back to my parents’ place absorbing the information that was just given to us. Round after round of tests were performed to get the exact size and location of the mass and other tests were conducted to check my blood work and blood flow. The surgery date was finally scheduled, November 7th, 2018. 

Prior to the surgery I received a call from my oral surgeon. The results had been returned from the biopsy: osteoblastoma. NOT CANCER! This was the first win my family and I had received throughout the journey thus far. This simplified the treatment plan to just surgery, recovery then teeth. A huge weight was lifted, and I was ready for my surgery with optimism. 

A 12-hour surgery led to a 7 day ICU stay. To date that was the most difficult week I had ever experienced. I was in so much pain I didn’t want to be awake. They covered me with heating blankets to elevate my body temperature to help the blood flow to the healing bone and skin grafts in my mouth. This was extremely uncomfortable as I was sweating constantly. Being unable to take care of myself in any way was very humbling. Just going to the bathroom felt like one of the most humbling experiences I had ever felt. I was forced to let go and let people help me. The nights were long and I was never able to sleep. I was fed only through a feeding tube which started to make me feel extremely nauseous. 5 days into my ICU stay I passed a swallow test and I was able to drink water and have broth for the first time. I never knew water tasted so good in my life!

After a week I was finally released to go to my parents’ place. My diet was still limited to only clear liquids, no solid foods. I could barely open my mouth there was no way I could chew anything solid anyway. I returned to UF Health for my post-op check-up a month later. They had performed a biopsy on the tumor they removed. It was confirmed to be osteosarcoma. CANCER. On top of that they found cancer cells within the margins of the graft. I needed radiation on both sides of my face. My heart sank into despair.

Proton beam radiation was recommended for its ability to be more accurately targeted to reduce collateral damage to nearby facial structures than traditional IMRT radiation therapy. The closest proton beam facility was in Orlando. The good news was after 2 months of recovery in Gainesville, I was able to return to my own home for radiation treatment. 

 January 2019: I met my new team at Orlando Health and began going through the process of getting ready for radiation. I was briefed on what the side effects would be and given some treatments to help protect my mouth. 5 sessions a week for 7 weeks of radiation were ordered. The sessions lasted around 40 minutes each. 3 different fields were used in each session. The process included being strapped down to a table by a plastic face net which would keep my head in the exact same place to consistently target the affected areas. A week and a half into radiation treatment I started to feel less energetic, but didn’t feel any other symptoms, until I noticed that the food I ate started to taste very bland. I had lost my sense of taste. Not long after this severe fatigue set in as well as mucositis in my mouth. These effects increased rapidly to the point where I barely had enough energy to walk and all surfaces of my mouth and tongue burned so badly that I could not tolerate the feel of solid food. Even water would burn intensely when I would drink. Although I had little to no energy, my entire body ached so badly that I could not sleep without pain medication. I began to abuse the oxycodone that had been prescribed to me as it was the only escape from the volcano that was in my mouth and aches throughout my body. The relief would only last a couple hours before fading into unrelenting pain again. 

5 weeks into radiation every part of my body hurt. My mouth felt like lava. My nutrition was 6 ensure protein shakes a day. I would chug them down as quickly as possible as they burned my mouth to the point I was crying uncontrollably. My weight dropped to 110 pounds. A stark change from my muscular 165-pound 12% body fat physique I had just 10 months prior. I would run out of energy just walking around the house and collapse on the couch unable to move. I started to question if I could continue. In the moments I felt closest to death I was able to find peace through acceptance. I channeled strength by defining my purpose. Strength that created the foundation for my relentless nature that is freed from fear. Purpose for my dog, who I had rescued the previous year. I promised to give him the life that he deserved so I better be around to give it to him. I also drew strength from the health care team and my family that had taken care of me. I did not want their work to be in vain. Anything that I could muster as motivation to chug down another Ensure shake, I used. 

March 25, 2019: I made it to the end. 7 weeks of radiation were finally complete, however the pain, burning and fatigue did not go away. This suffering lasted another 2 months before finally subsiding. The burning in my mouth finally lowered to the point where I could eat solid food. My first meal: KFC mashed potatoes. I still couldn’t tolerate fried chicken, but it was a start. My energy came back slowly but didn’t return to normal for well over a year.

Long term side effects started to show not long after radiation had ended. My mouth muscles were tight and scarred, and it became difficult to open my mouth any wider than quarter of an inch. I could only eat food in small bites. This continued to progress to the point where I could not fit any solid foods into my mouth or chew anything. I was again forced onto a liquid diet. A follow-up surgery was scheduled with my ENT to ‘mechanically stretch’ my jaw. This allowed me to open my mouth to about a half inch. Not enough to bite into a sandwich, but I could fit small bites of food into my mouth and chew. This is a problem I live with to this day. Eating is a difficult and tiring task. I usually get tired of eating before I get full which has made it difficult to gain weight and strength back. 

The other side effect was a copious amount of thick and very sticky mucus in my nose. This would accumulate and harden in both nostrils and almost completely block the flow of air in my nose. I was only able to breathe through my mouth which caused dry and cracked lips. I started experimenting with all the different nasal cleaning systems and found some solutions that were able to flush the hardened mucus out of my nose. This is another recurring problem as I need to rinse my nose several times every day to breathe clearly. The constant flushing also leads to regular nose bleeds which range from moderate to severe almost daily. 

March 2020: 40 sessions of hyperbaric oxygen treatments were scheduled to help my recovery and aid in preparation for the last leg of the journey: getting my teeth!

February 2021: After waiting through covid shutdowns and several other oral surgery procedures a prosthesis was finally created and delivered. I finally had a real smile again and something to smile for. 

September 2021: 35 more sessions of hyperbaric oxygen treatments to prevent osteonecrosis of the left side of my jaw.

May 2024:  Another mechanical stretching procedure to increase the size of my mouth opening.

As of May 13th, 2024 no further scans for cancer recurrence are needed or scheduled. 

The last 6 years have been the most difficult time of my life. It has been filled with unfathomable pain, unwavering support and most importantly, impactful change. I am a much different person now than I was in 2018. Having faced life threatening circumstances and come out the other side I have become a more grateful person. Every day is a gift in which I’m able to be more present and live authentically. I have become a more empathetic and compassionate person and leader. I thrive on personal connection and have a desire to make a positive impact in other people’s lives. I feel that I can leverage my story and experiences to inspire, motivate and support cancer patients and survivors as an ambassador and activist.