Renae Henderson via Crowdrise
June 28, 2013
BENEFITING: Sarcoma Foundation of America
EVENT DATE: Aug 06, 2013
On January 2, 2013 at 30 years old, I was diagnosed with epithelioid sarcoma (ES) - a rare and aggressive soft tissue sarcoma cancer most often found in young adults. To be diagnosed with something that hardly anyone has ever heard of (including doctors) is both terrifying and frustrating. People often can't understand how cancer in your finger can be so dangerous making the experience all the more isolating. Per a lot of requests, I've included more about my story at the bottom.
I will be climbing to the summit of Mt. St. Helen's on August 6, 2013 to help raise money for all sarcoma cancer research. In addition to raising money that will help fund research for treatments and causes, my climb is also to honor all of those who have lost their battle with ES or are currently fighting. Please sponsor me or consider joining me and share this page to help increase awareness! The money will go directly to the Sarcoma Foundation of America. For more information on SFA, visit: http://www.curesarcoma.org/.
A few facts about sarcomas from SFA and why we need your help:
- Sarcoma is sometimes curable by surgery (about 20% of the time), or by surgery with chemotherapy and/or radiation (30%), but about 50% of the time they are totally resistant to all of these approaches — thus the extreme need for new therapeutic approaches
- The most frequent location is the limbs since this is where the majority of the body’s connective tissue resides. They are commonly hidden deep in the body, so sarcoma is often diagnosed when it has already become too large to expect a hope of being cured
- Only 1 new drug has been FDA approved in the last 30 years for sarcoma cancer
- Approximately 50,000 patients and their families are struggling with sarcoma. About 12,000 new cases are diagnosed each year and about 5,000 people die each year from sarcoma (I'll let you do the math on the 5-year survival rate if you're interested)
- Sarcoma is a rare cancer in adults (1% of all adult cancers), but rather prevalent in children (about 15% of all childhood cancers)
The majority with epithelioid sarcoma initially or eventually experience radical tissue removal (surgery is the most effective treatment to date) that often means amputation of fingers, toes, hands, feet, arms, and legs. It has a very high rate of recurrence and most commonly spreads to the lungs or lymph nodes (although it can spread elsewhere too). There isn't a lot of information on ES, but for a little more, please visit:
Many have asked me more about my story. I share this in hopes that it can help someone else out there. I'll say first that my story is probably best case scenario for ES, and it doesn't even begin to experience what a lot of others have gone through or are going through right now.
While I was pregnant with my now 2-year-old, I developed what I thought was a wart on my finger. Gross but harmless, and we laughed that it was all just crazy pregnancy hormones and a sign that I was definitely having a boy. I had it treated on and off since over the last 2 1/2 years with no luck of getting rid of the thing.
In early November 2012, I went to the doctor for bronchitis. My regular doctor was busy so I saw someone different. This doctor turned out to be an angel sent from God. He asked if I had any other concerns about my health so I showed him the wart on my finger and joked that I was starting to think I had a tumor and not a wart. He took a look and said that it was a tumor that needed to be removed but probably harmless. He was the 6th doctor I had showed this to but the first one to realize it was not a wart.
As I found out on January 2, 2013, it was not harmless, but epithelioid sarcoma. I had never even heard of sarcoma before my diagnosis. I couldn't understand what the doctor was trying to tell me until he finally just said the dreaded words, "you have cancer." I was in shock for a long time. Maybe I still am. I didn't know young, active people who eat their fruits and veggies could possibly get cancer. I felt fine. I got a yearly physical that always showed perfect numbers. It was just a bump on my finger!
The following weeks included a lot of scans to see how bad the situation may be, and also a lot of tears and heartache. There's nothing quite like facing your own mortality. Before cancer, I had never considered any scenario outside of living a long and healthy life. You truly realize how precious and beautiful the little things in life are, and that each day is such a blessing that's not to be wasted. During this time was when I wrote down a list of things I wanted to do, and climbing to the top of Mt. St. Helen's made the list. So did helping others with sarcoma in some way. This is how the Sarcoma Hike for Hope idea started.
Our prayers were answered when we finally got the results that my ES had not spread elsewhere yet. I am very blessed to currently be in recovery after having surgery to remove the tumor and surrounding tissue and some tendon. It's rare for them to be able to save a finger with ES, and was only possible because my tumor size was small. It was beyond what I ever hoped to be possible when this all first started.
I'd love to tell you this is now all over for me and life is normal again. People ask me, "so are you cured?" It doesn't work that way, unfortunately. I'll have a chest CT done every 4 months for the next 2 years because ES comes back frequently and often goes straight to the lungs or lymph nodes when it does with no symptoms. After 2 years, the scans will be every 8 months, and then after 5 years, once a year until I hit 10 years. Yes, I do worry about all that radiation if you're wondering, but without it, I'd worry about ES. It's a long road, and each scan and visit to the oncologist takes a strength you can't fully appreciate if you've never had to go through it.
I'm not the same person either. I see almost everything differently, and take care of myself in a way I never have before. I've become a vegan and a runner. Two things I never would have imagined. I also take each day at a time and smile at all the blessings God has given me whether they be big or small. I say to myself often the quote, "Life isn't measured by the number of breaths we take, but by the moments that take our breath away."