Tom’s Story

Site created on May 21, 2021

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Journal entry by Tom Elledge

My journey started in 2003, the same year I ran my first marathon.  The marathon was in Alaska so I brought home frozen salmon.  In August I got a salmon bone stuck in my tonsil and ended up going to the ER due to an ugly tonsil.  The first mistake was telling the doctors I got a bone stuck and misled them into thinking that was the catalyst for the ugly tonsil. After seeing 5 doctors, the last one telling me to get it cut out, I had a tonsillectomy.  The ENT then biopsied the tonsil after the surgery.  When he said I needed to come to his office for my update, it was the longest hour of my life.  When he said I had squamous cell carcinoma I didn't know whether to laugh at such a funny name or cry.  Then he said he didn't get it all and I had a positive margin, then I didn't know what to do.  He sent me to an ENT surgeon who only performed very drastic measures.  That was more than I needed and I proceeded to go to 9 more doctors trying to figure out what to do next.  They all had different views.  I ended up getting a radical tonsillectomy which ended up cutting out a small portion of my tongue base and a lot of my throat. Not only did it hurt, I had to learn to swallow differently. Radiation was next and I had done my homework and had the latest greatest radiation equipment in the Valley perform it.  The oncologist was able to bend the beam around my brain stem, my carotid artery and my salivary glands.  It was minimal damage compared to getting my head blasted. 
In 2012 I had a PET scan to see if the squamous cell had returned.  Again, the doctor told me to come and which led to another very long wait to hear what he had to say.  The doctor actually said, "I have good news and I have bad news."  The good is that the squamous cell had not returned.  The bad is that you have a 15 cm tumor on your right adrenal gland.  He wondered if I had back pain and shortness of breath (the tumor was attached to my diaphragm).  Yes, I worked on the airport ramp unloading and loading aircraft.  We all had sore backs. And I thought I was just getting out of shape since I hadn't been running so of course I was short of breath.  So, I found the best surgeon in the SW and he and his team removed my right adrenal gland.  I was told I had adrenocortical carcinoma (ACC).  It hadn't metastasized so I went home and was monitored twice a year for 5 years and then once a year following that. One doctor wanted me to take a form of chemo in a poison pill, another didn't support that and what I found in the literature made me think it was better to not take it.  
If you're not familiar with ACC, it happens in about 1 in a million people.  Compare that to 1 in 8 women getting breast cancer.  Now comes the really unlucky part.  While being monitored in 2019, they found a tumor in my left adrenal gland.  The doctors agreed it was a new tumor, not a recurrence or metastasis. I'm not a mathematician but I think that makes the chances of that happening 1 in a billion or trillion or ?  Just so you know, I haven't won the lottery, it's all been bad luck.... It was cut out along with the adrenal gland and again I was told to take the poison pill and maybe think about radiation.  That was right at the beginning of Covid and even if I wanted to do both, there was a chance they would put me into an adrenal crisis, which can also be deadly.  So I didn't do either. Every day is a beautiful day and I know I won't get ACC again in an adrenal gland...  It can pop up in other parts of my body so I'm being monitored again and hoping to live a long and prosperous life.  
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