Profiles of Sarcoma: Barry

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Barry Burgoyne is a husband and father of two who has faced the battle against sarcoma. Every story is different, every experience is different and every time someone shares their story we learn something new. Thank you Barry for taking the time and courage to tell us what you have been going through and for offering advice to others facing sarcoma and their caregivers. 

If you or someone you know would like to share your story of sarcoma or rare cancer with EDDF, please click this link.

Eric D. Davis Sarcoma Foundation (EDDF): Tell us a little bit about yourself.

Barry Burgoyne (BB): Hello everyone, my name is Barry Burgoyne. I was born and raised in West Chester, Pennsylvania. I am currently 29 years old. I have a beautiful wife Michelle; our 5 year anniversary will be May 2013. We are the parents to two beautiful twins who will be 2 years old March 2013. Their names are Giuliana and Luca.

I graduated from Henderson High School in 2002. I then went to college for a few years and decided, or at least thought, it wasn’t for me. My next endeavor was technical school where I studied automotive repair. I graduated from technical school in the fall of 2005.

I then worked as an automotive mechanic for a few years, which led to a shop manager position. I am now in the process of changing careers.  Although it is a passion of mine, I have to do what is best for both my physical well-being and my family. I am now stepping back into the world of IT which was a hobby of mine in high school along with cars.

I enjoy spending time with my family and friends. I have played sports most of my life and continue to play ice hockey and softball to name a few. Watching my children grow up, sports and enjoying the time we are given here on earth are my favorite things.

EDDF: What type of sarcoma did you have?

BB: I was diagnosed with Ewing Sarcoma soft tissue cancer on April 12, 2013. They believe it started in my T9 vertebrae in the bone cancer form which than transformed to soft tissue.

EDDF: How did you first detect you had sarcoma? 

BB: I always had back issues so I didn’t think much of it in the beginning. Around Oct 2011, I had strained a muscle in my upper right back, but I didn’t put much thought into it.  My wife and family said I had looked ill, but we all figured it was from the twins teething and not sleeping well. The next symptom was reflux, but again there was a reason. I was in the midst of switching jobs, Christmas was around the corner, the New Year, and I had a new job. I ignored the pain and kept pushing forward. Then on my wife’s birthday, I had fallen down our stairs. In doing so I herniated my L4/L5, L5/S1 discs on both sides. This was a blessing in disguise. I got scans done and was about to begin therapy until my entire right abdomen became numb to the touch and in excruciating pain.  I had nerve tests done and they all checked out okay, but the pain was the worst it had ever been in my T9 vertebra. So I demanded scans on my thoracic, and the tumor was found. It has incased my aorta and esophagus occupying more than 40% of my spinal canal. I had caught it just in the nick of time. Within another weeks’ time I may have been paralyzed.

EDDF: Tell us about your experience with sarcoma and sarcoma treatments.

BB: Upon the findings of the tumor, I immediately started steroid medication on that Friday April 13th, 2012 to keep it from becoming any larger until I started chemotherapy treatment Monday April 23rd 2012. I had 7 chemotherapy cycles and 31 radiation treatments. I finished my treatments October 2012. The treatments were very intense. The chemo made me sick and nauseous to name the two most common.  I’m almost at a loss of words here. It’s hard to put this experience into words. I would never want to go through it again; but if I had to I would because I now live for my children and a higher power.

EDDF: What advice do you have for someone who is newly-diagnosed?

BB: The best advice I can give is advice I was given. Every day you get up, look at it like any other day you’ve faced. Just tell yourself you’re going to win no matter what.  Do not allow your mind to be defeated. Don’t give up even though it will be very hard some days. Keep positive thoughts, vibes and attitude. I always told myself that there is always someone out there who could have it worse.  I was reading David Linn’s Huffington Post article “How to Dance After Losing it All” and was struck by a motto that he and his wife lived by during her battle with a rare cancer that I also live by each day: “Year by year, it’s all unclear, but day by day, we’ll find our way.”  Do NOT lose FAITH and do NOT lose HOPE! When someone gets diagnosed with cancer, it doesn’t just affect that single person. The whole family get it as well.

EDDF: If someone has a friend or family member with sarcoma what are some ways they can support that person?

BB: The best advice I can give is for everyone around them to stay as strong as they can. Your support group is now your foundation, and without a foundation we’d crumble. Feeling mixed emotions of sadness, anger, & resentment are all normal. The only thing that we won’t ever have an answer to is the question why.  It’s hard not to ask why, but the Lord has a plan and purpose for us all. We may not see it now or ever for that matter. He does not give us more than He feels we can handle. So stay strong, supportive, and positive and walk by their side through and through.

EDDF: Anything you would like to add? 

BB: God bless and stay strong.  Be thankful for all of the chances and opportunities we have been given up to this point. Do not take life for granted.  We are here today but not promised tomorrow!

Peace, Love and Health

Barry Burgoyne

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