I met the notary in the parking lot of a grocery store to sign my last will and testament. I was 35 years old, a mother to two young children, and married to the love of my life. When you are about to undergo a radical surgery like I was, you have no choice but to plan for every outcome.
I was diagnosed with Clear Cell Odontogenic Carcinoma, one of the rarest forms of cancer in the world.
It had been my dentist that saved my life.
I was long overdue for a cleaning. We had just relocated as a family and were new homeowners, life was good. I found a dental practice to go to from a $99 coupon we got in the mail. I decided to book the whole family appointments.
At the dental office, I was told I had the option to have an oral cancer screening for an additional twenty dollars as part of the new patient package. I figured why not, so I had it done along with my standard x rays.
After my cleaning, the dentist, hygienist, and office manager walked into the room. The dentist was holding my x rays in her hand. She said we needed to talk. “We found a dark spot on your x-ray with your velscope screening. We need to talk to you about what we need to do.” I was a little startled. All I heard was the word “dark spot”. I was scared and started to tear up. The dentist told me everything would be fine that just better imaging was needed. So, they took me to their back room and ran an additional 20 x rays, free of charge. They put all the images on a disc and also attached them in an email for me to take to an oral surgeon.
The oral surgeon found a tumor the size of a golf ball in my right jawbone. It was slowly separating my bone and slowly breaking my jaw. The tumor had also been pushing my nerve out of the way, that being the reason for never feeling any sort of pain.
A small sample biopsy indicated that the tumor was not cancerous, but it was so large the oral surgeon could not remove it on his own, so he referred me to a medical university in Charleston, over 300 miles away from our home.
So, we traveled to Charleston. Upon arriving, the department chair walked up to me and said, “I know you are worried about your pathology.” I was taken back by this comment, I said, “No. I’m not. My pathology results were good.” He said to me, “ Well … on the bottom of your lab result there’s a paragraph that states your tumor did not react well to the dye.”
He advised after the tumor was removed that another biopsy be conducted. I agreed to it, it seemed like the logical thing to do, but nonetheless unsettling to hear.
The tumor was removed successfully and two weeks later we came back. This time we brought our kids along. We were seated in a room as a family, waiting for the doctor to come in. Then, all of a sudden, out of nowhere, not one but six doctors walked in. They proceeded to tell me that they discovered I had a very rare form of oral cancer, Clear Cell Odontogenic Carcinoma. There were less than 80 reported cases in the entire world and no known survivors past five years. It was also reported as a very aggressive cancer, too aggressive even for chemo or radiation to be effective.
As the doctor delivered the news, my heart sank. I looked over at my children, my eight-year-old daughter, and my one-year-old son, I knew from that exact moment on, how I reacted was how my whole family would react. If I broke down and cried right then and there, everybody I loved would too, but I didn’t want that. So I held it together for the sake of my family.
I tried to find as much information as I could on my diagnosis. There literally was nothing. I called the Center For Rare Disease Control, I called Mayo Clinic, cancer research centers, I looked for help anywhere I could find it. There simply was none to be had.
It was a long and hard month until the doctors came back with a plan of action after discussing my case at tumor board. I was told they were going to remove my entire mandible on my right side, where the cancer was growing. I had the option of having it replaced with bone and tissue from either my leg or scapula. We were living in a two-story home and my son was just learning to walk. So, I chose my scapula, that way I would still be able to get around my house.
After hearing the news of this radical surgery that I’d need, I panicked. It was going to be upwards of $600,000 in cost. There was no way of knowing what insurance would cover, after all, I had one of the rarest forms of cancer.
At this point I was desperate. So I made a Gofundme page. I didn’t know what to do. Within 24 hours of the page being shared, someone reached out to me. They told me that they knew of someone that could help me. I was thrilled. That afternoon I received a phone call from Linda Miles.
Linda was my guardian angel. In 2013 she co-founded the non-profit, Oral Cancer Cause. From this non-profit, she was able to connect me to oral cancer survivors who had undergone similar surgeries as to what I was about to face. She even told me that they helped a man in the previous year who had the same diagnosis as me. At first, I didn’t believe it, but soon I was in contact with Tim, who lived in Maryland. He was a blessing and became family.
Immediately my whole outlook on the situation changed. I went from being isolated and alone with no one to turn to, to knowing that there was someone else in the world that was going through it all too.
A week after my phone call, a card turned up in the mail from Oral Cancer Cause. In that card was a check for a substantial amount of money. There also was a special note from Linda. She said she wanted me to put my son in daycare while I was recovering. Tears ran down my face. The fact that I was a complete stranger and yet treated with such love and support was an amazing blessing for my life. It changed me forever.
My surgery was a 20-hour procedure, conducted in two parts. My oncologist and cancer doctor came in and removed my jaw, the remaining tumor, and all the material around it. And then a plastic surgeon came in and installed the flap in my face, which has left me with a permanently swollen cheek, I call it my squirrel cheek. My mother who lived in Alabama quit her job and came to live with us after I came out of surgery because I wasn’t able to drive or do much of anything. I had a lot of wonderful support and slowly but surely, was on the road to recovery.
In March of 2016, after I was fully recovered, the offer was extended for me to work for Oral Cancer Cause, to help spread awareness and raise funds for others who were diagnosed with oral cancer. I have been so thankful for this opportunity. I am especially grateful for all of the dental communities that are out there, offering oral cancer screenings and saving lives. Afterall, it was my dentist that had saved my life.
Today, Oral Cancer is the only cancer that has not had an increase in survival rate in over three decades. That’s why at Oral Cancer Cause we are working so diligently on educating the population on the importance of having an oral cancer screening. There are a lot of fluke cases, such as mine. I wasn’t a smoker and I was a healthy individual, and yet here I was with one of the rarest forms of cancer in the world.
I was very lucky in that I didn’t lose my voice during this whole process. Many oral cancer survivors have lost their ability to speak, so I use my voice to tell their stories, standing strong as an advocate and a survivor of the cause …
Visit Amber’s personal website here.
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