Jason’s Story

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I was in total disbelief because I felt nothing—not one symptom.

Back in April 2014 while 44 years old, I placed my hand on my neck to ponder a question during a financial exam, and felt a bump. After the exam, I immediately called my Ear, Nose & Throat (ENT) doctor and he told me that because I didn’t smoke or drink that I could see him in the next few weeks. As a guy who always goes to the doctor, I saw him in his office 3 days later. He gave me 10 days of antibiotics and steroids, and scheduled me for a needle biopsy and CT scan, in case the bump didn’t go away.  It didn’t. After returning from a quick vacation to the Florida Keys and a business trip to Washington DC, I had the needle biopsy and CT scan.

 

  Scary News

Three days later, I received the scary news: I had squamous cell carcinoma of the right tonsil, and I was ultimately diagnosed with stage 4 HPV-related tonsil cancer. I was in total disbelief because I felt nothing—not one symptom. I had never even heard of HPV-related oral cancer. My doctors explained that I may have been exposed to HPV virus in college, over 25 years ago.

I had been married at that point for 17 years and had 3 kids, I had just achieved my target healthy weight. I was working 50+ hours a week, everything was going great. All of a sudden I worried I might be leaving my family. I made videos for each of my three kids with my message about what’s important in life—just in case.

 My Treatment

I ended up having a radical tonsillectomy and neck dissection. This is a procedure where they removed 42 lymph nodes from my neck.  This was incredibly painful and left half of my face numb for months after. I still get a charley horse type cramp in my neck several times a month where I had that neck dissection.

My doctor told me that with surgery and radiation alone, my chances for survival were about 85%. When I asked about adding chemo, he told me that would increase my chances for a positive outcome by an additional 5-7%. To me it was a no brainer. I thought about my kids, (at the time my twins were age 12 and my son was age six). Would I expect them to study harder for a math test in order to receive an A or 90-92%, compared to simply receiving a B or 85%? Absolutely, I would.  I had to choose the most aggressive plan of treatment to ensure my greatest chance for survival. So I had seven weeks of chemotherapy and radiation.

 

 

 

The last three weeks of radiation treatment became pretty brutal for me. I had third degree burns in my throat and couldn’t swallow any liquid, or even my own saliva. I was gagging and choking 20 or more times a day—and this lasted until about three weeks after treatment had ended as radiation effects are cumulative. I also learned to check my blood pressure every few hours as a way to see if I was getting dehydrated. An increase meant I needed fluid. I would use a large syringe to give myself seven Ensure drinks and two Gatorades a day through my feeding tube. Still, within a few hours of going to sleep I would become dehydrated again, as my body would suck the fluid from the inside out. My saliva became so thick after five weeks of radiation that it would cover my airway when I fell asleep. I would wake up almost every hour choking, not able to breathe.

During this time, I taught myself to separate my mind from my body. My will to live and my ability to compartmentalize all that was happening enabled me to remain strong and positive. I was determined to get through the ordeal not only for myself, but for my wife, my kids, and my extended family and friends.

Becoming “SupermanHPV”

My friends started calling me Superman during chemo and radiation, and gave me Superman t-shirts and action figures to show I was Superman tough.  After I finished my treatments I wanted to pay forward all the incredible support I got from my family, friends, and my medical team. It’s important to me to make a difference.  My kids are vaccinated. But that’s not enough. I want everyone’s kids to be protected from what I went through.

I don’t wear a cape but I can save lives. I chose the name SupermanHPV because it helps me spread the word about HPV-related oral cancer. I now serve on the board of the Head and Neck Cancer Alliance. This is just one of the ways I can share what happened to me, emphasizing the importance of vaccinating boys as well as girls.  I have a lot of energy now that I have survived cancer and I want to protect future generations from getting HPV cancers.  That’s why I keep telling my story; that’s my superpower.

 

Jason Mendelsohn (aka SupermanHPV)

Check out Jason’s video story on ShotbyShot.org or read more about Jason at his website: SupermanHPV.com.

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Judi Van Hulzen, RN
Marion County Public Health