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Thomas - My Story


#1

My story begins in mid 2012, my freshman year of high school, I had been experiencing very painful tenderness in my right ankle. I had been going to workouts for wrestling and it was determined that I had a stress fracture. I wore a walking boot for approximately 6 weeks. The tenderness was not better, it was worse. It was so bad that I gave up athletics until this year, my senior year. My father, an orthopaedic surgeon, was baffled by my pain. He and several other orthopedists viewed all of my MRIs and x rays many times, and couldn't come up with an explanation for it. After working as a lifeguard all summer, I decided that I did not want to finish high school without the experience of competing in a sport. All of my close friends had run cross country for all of their high school careers. I told myself that I would stick out the pain, knowing that it would be exponentially harder for me because of my condition. During practice, I pushed myself too hard. Plantar fasciitis hindered my progress even further. I took it easy and my heel felt good enough to run on. My ankle was still the same, per usual, but I expected that. My first race: the Coaches Classic in Columbia. I ran the warm-up with my friends, which in hindsight, was probably a mistake because I was very tired after just that. Then the time came for the actual race, I was running JV. I started off great, for about the first mile, anyway. Then I noticed a sharp pain in my heel again. Eventually I limped my way to the straightaway and ran as hard as I could. It was excruciating. My first cross country race and I had finished with a time of 29:27, which if you know about running, is pretty slow. I am still proud of myself for finishing through the pain and at least breaking 30 minutes. Immediately afterward, I couldn't walk. Well I could, but it was more of hop on one foot. I went to a foot specialist the next day and had another MRI and x ray. Stress fracture. I was going to be in the boot again. I was annoyed. I tried on the boot once more and I couldn't bear the pain of it. This prompted my dad to take another look at my ankle. This time there was a palpable bump. I am not sure I have defined my level of pain from the spot, I will do so now. Walking, and running were pretty painless in their own rights, but if just my shoe lace popped up and grazed my ankle ever so slightly, I would be on the ground writhing in pain. My friends often referred to my condition as "Downy ankle." I had a consult with a good friend of my dad who is a plastic surgeon. He was just going to go in and remove whatever was there. He suspected a neuroma. After the excision, the pain and hypersensitivity was gone! The growth had been pressing against a nerve in my ankle. He said that, even under anesthesia, when he pressed the spot, my leg kicked and jerked. The day of that surgery was a Senior skip day, the day my high school's football team played our rivals. While most of my classmates participated in this ridiculous tradition of mudding, I was in the hospital. I stayed in bed for a day, missed the big rivalry game, which my girlfriend went to without me, and was up the next. My pain was completely gone and I was finally able to live my life without worry of something bumping into me and causing great pain. A couple of weeks later, on October 14, 2015, I woke up, went to school, and came home. What was a normal mundane day turned into one which I will never forget. I walked in the door, greeted my mom, and began walking up the stairs. My mom said she had something to tell me. I told her to hold on a minute while I took my backpack to my room, then I came down the stairs. I suspected she was going to tell me about something for college applications. I got to the bottom of the stairs and she said that the test from what they took out of my leg came back. She said I had cancer. My heart stopped. What?! I'm 17 years old and I have cancer? The first thought I had was how I would never be able to get married and have kids. I said "What do you mean I have cancer?" She told me that I had synovial cell sarcoma. Everyone remembers exactly what that feeling is like. Your own mortality has been called into question. I broke down and cried on my back porch. I texted my girlfriend and told her and she came over to comfort me. I was in denial for a few hours, and I couldn't stop crying. My dad, who was in Chicago, called me and consoled me and told me that he had already spoken with a friend of his who was an oncologist and he said it was very treatable. I went over to my girlfriend's house that night and told her parents. Then we went to the county fair. She had won several awards for her artwork. I was consumed by the thought of dying before I could even experience all that life has to offer. I had a PET scan two days later and it was clear. The initial surgery had gotten all the measurable tumor, but since nobody was expecting it to be cancer, the margins were not adequate. I went to Charlotte, NC the next week to Levine Cancer Institute and met with Dr. Pope and Dr. Kneisl. The initial plan was for me to have three rounds of chemo. Hearing that was very tough, as I also found out that I would probably have to miss a lot of school and drop some of my AP classes. I began thinking of ways that I could stay in school without compromising my health, which in hindsight, probably wasn't the best idea. Around a week and a half later I was told that my case had been reevaluated and that I would have a large excision with wide margins removed on November 12, 2015, followed by a skin graft 12 days later. This method would be INSTEAD of chemo, which was a huge relief for me. As vain as it sounds, I was really not looking forward to losing all of my body hair, after all, it had taken me 17 years to grow decent chest hair. My parents and I went to Charlotte the night before the surgery and went out to eat. It was really nice to have my own hotel room for once, normally I share with one or more of my siblings. The next day I checked into the children's hospital (I was the only person above the age of 10 from what I could see). Dr. Kneisl and a resident, Dr. Wilson, explained the entire operation to me , then I went back. I woke up was wheeled out to the car with a wound vac on my ankle. The pain medicine was awesome. My friends came over and brought me chocolate ice cream and told me all the drama from school that day. For the next three days I was in bed and on pain medication and was very well taken care of by my mom and dad and girlfriend. I returned to school in a wheelchair the following Monday. The subsequent skin graft went very well, I wore the wound vac for a few more weeks until the graft had taken all the way. I was still unable to walk due to the large chunk of flesh removed and the inactivity of my right leg. A month later, I was walking again. I went back for a follow-up in January and everything looked good, no evidence of disease was found. I have full use of my leg back and life my life, for now, without the threat of impending doom. I feel that I have somehow cheated though, in that all I had was surgery, while many others like me have had to endure months of chemo and radiation. I really feel guilty that my path, at least for the time being, has been relatively easy compared to others', but I still get to call myself a cancer survivor. I don't know how I am supposed to feel, but I am grateful to be alive and disease free.

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#2

Interesting story. I wonder if synovial sarcoma was in your ankle since 2012 too small to see or if it appeared later in a way related to your injury. Many sarcoma tumors grow at the location of a prior injury...

Good for you that you didn't need chemo. Let's hope that surgery did the job and the beast won't come back. Now you learned that you can't take life for granted so do enjoy every minute of it :-)


#3

Your story is so similar to mine except mine was in the knee. The surgeries sound very similar as well. Mine was 20 years ago! As guilty as I sometimes feel, some of us live full long lives. God bless and I hope I can be somewhat of an inspiration.


#4

Loved reading your story. My son Will has a similar story and outcome. He was an athlete too and continues to thrive ... which I pray you do as well. Although you may have "cheated" (your words, not mine :) you can be a great positive example for everyone. I'm so happy for your outcome and continued good health.


#5

@Elodie, yes after looking at the MRI, the sarcoma was present, the only assumption I have is that the radiologist had not seen one before. Thank you for welcoming me to this community.


Elodie Espesset said:

Interesting story. I wonder if synovial sarcoma was in your ankle since 2012 too small to see or if it appeared later in a way related to your injury. Many sarcoma tumors grow at the location of a prior injury...

Good for you that you didn't need chemo. Let's hope that surgery did the job and the beast won't come back. Now you learned that you can't take life for granted so do enjoy every minute of it :-)


#6

@twinljp I still often worry about the long term survival, but your longevity has given me more hope!

twinljp said:

Your story is so similar to mine except mine was in the knee. The surgeries sound very similar as well. Mine was 20 years ago! As guilty as I sometimes feel, some of us live full long lives. God bless and I hope I can be somewhat of an inspiration.

#7

@Noggin I have started back trying to regain my form, thankfully I'm still very young. I hope Will is able to continue to achieve in athletics!

Noggin said:

Loved reading your story. My son Will has a similar story and outcome. He was an athlete too and continues to thrive ... which I pray you do as well. Although you may have "cheated" (your words, not mine :) you can be a great positive example for everyone. I'm so happy for your outcome and continued good health.


#8

Thomas It is so great to read stories like yours. Thanks for sharing!


#9

Delighted for you Thomas. Our daughter was also 17 when diagnosed with this rotten disease. Like you she only had surgery with radiation therapy and large amounts of her thigh removed. She is now 24 and is nursing away in Australia, which is miles away from us here in Ireland. Her major problem has been the result of her radiation which really burnt her leg tissue and nerves. She has a small limp and gets tired but considers herself a Cancer Survivor too.

Miriam Fitzmaurice.


#10

Thank you Lynda! I hope for the best for your daughter!

Lynda said:

Thomas It is so great to read stories like yours. Thanks for sharing!


#11

What a wonderful similarity thank you Miriam
miriam fitzmaurice said:

Delighted for you Thomas. Our daughter was also 17 when diagnosed with this rotten disease. Like you she only had surgery with radiation therapy and large amounts of her thigh removed. She is now 24 and is nursing away in Australia, which is miles away from us here in Ireland. Her major problem has been the result of her radiation which really burnt her leg tissue and nerves. She has a small limp and gets tired but considers herself a Cancer Survivor too.

Miriam Fitzmaurice.