My cancer was discovered during a routine dental cleaning visit to my dentist. He found a fluid-filled mass on the left floor of my mouth. It turned out that the fluid built up because there was a mass on my salivary gland. I had to have a very painful surgery to remove the tumor, the salivary gland, and the nerves and lymph nodes around it where cancer had metastasized, followed by reconstructive surgery to build back the roof of my mouth and reattach my tongue using a graft of skin and nerves from my wrist to build the “flap.” The surgery was 14 hours, and then I had to have the reconstruction and reattachment of my mouth, tongue and wrist tested every hour for 2 weeks in the hospital. I could not eat, swallow, or talk on my own. The surgery was followed by 33 rounds of radiation and 7 rounds of chemo. The results of the radiation and chemo were that I lost all of my tastebuds and had mouth and tongue sores for 4 months, which made it impossible to eat. So I had to have a feeding tube for 8 weeks. 10 months out, I am healed, and there is currently no further evidence of cancer. I have relearned how to talk and eat using only one side of my mouth, and I have regained about 70-75% of my tastebuds on the right side of my mouth. I will never be able to taste or use the left side of my mouth. The type of cancer I have is rare, and there are not good studies on treatments. While I had the most aggressive known treatments to try to stave off recurrence, there is no cure, and this cancer tends to recur in the neck and lungs. I get tested every three months for the first year or two. My journey now involves learning to live in my new normal state and with the anxiety of a recurrence. It also includes the hope that more research and studies will lead to more treatment options if and when this recurs.
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