Inspiration Necklaces For Sarcoma Foundation Research

October 26, 2013

Inspiration Necklaces For Sarcoma Foundation Research

A good friend of mine Renae, was diagnosed with a rare type of cancer this past January and her story really hit me hard. She was the second of many people in my life that was diagnosed with cancer this past year. I asked her to tell us a little about her story.

“I always feel full of hope as a new year approaches. I love imagining all that the year ahead has to offer, and how it will be the year I really do make it to the gym 5 days a week, have more patience, and start meditating daily. It would turn out that 2013 would be my hardest year yet and that fitting into skinny jeans would be the least of my concerns.

On January 2, 2013, I received a call from my dermatologist with the biopsy results from a mass I had removed from my left index finger in early December. He told me I had something called Epithelioid Sarcoma and that I needed to find a specialist right away, that I would need surgery and probably radiation. I had no idea what he was talking about and I finally interrupted to tell him I didn’t understand. “You have cancer. I’m so sorry. This is horrible news to deliver to someone at the start of a new year,” he said. Thinking of that moment still brings tears to my eyes almost a year later. All I could manage was to write down my diagnosis, tell him thank you, and hang up as quickly as possible before I started to cry. I had never heard of sarcoma cancer prior to my own diagnosis.

So what do you do in 2013 when you get diagnosed with something? That’s right, I turned to Google. There was very little information about my type of sarcoma cancer and very little about sarcomas in general. They make up only 1-2% of cancer cases in adults, around 15% of cases in children and there are 50+ subtypes. The information that I did find was absolutely terrifying – the statistics were not in my favor for long term survival.

I am fortunate to live in Portland, OR that has a sarcoma treatment center at OHSU, and I was able to get in to see them within a week. That sounds really fast, but when you have a week to do nothing but read scary things on the Internet and wonder if you only have a few months to live, a week is an eternity. By the time all of the tests were done and I had results, it was closer to 3 weeks passing. The worst 3 weeks of my life. I could hardly look at my 2-year-old son without crying. My absolute biggest fear was leaving him without a mom at such a young age. These tests were especially scary for me because I had the mass on my finger for 2 ½ years before it was finally removed and biopsied. It actually first appeared while I was pregnant with my son. I had given the cancer 2 ½ years to have its way with my body and it was hard to stay positive and imagine that it hadn’t already metastasized (spread) since it’s an aggressive form of cancer. The tests confirmed the Epithelioid Sarcoma cancer, but that it had not spread to any lymph nodes or into my lungs (these are the areas where it most commonly metastases to)! The relief was overwhelming. That’s an understatement but there are no good words to truly capture it. I went on to have surgery to ensure that all the cancer was removed from the finger. We had thought amputation was going to be necessary, but I was blessed once again and they were able to save it.

While my journey is far from over and my life still involves a lot of tests for many years to come, my story is truly a best case scenario. Many Epithelioid Sarcoma patients undergo radical surgery and/or amputation most commonly of their hands, feet, arms or legs. The 5-year survival rate for all sarcoma cancer is about 50%. Most are diagnosed when it’s too late for hope that any current available treatment options will work. There has only been 1 new drug developed in the last 30 years to treat sarcoma cancer. Being that it’s so rare, there isn’t much funding for research. I feel so fortunate to be cancer-free today. I know not everyone receives good news like I did, and that’s why I volunteer with the Sarcoma Foundation of America. They devote their resources to research and finding a cure as well as better treatment options until that day comes.

I’m a huge fan of Andrea’s jewelry and asked if she’d be interested in designing a piece with sarcoma patients, their family and their friends in mind. Then, I took the favor up a notch and asked if she would also consider donating a portion of the proceeds from the inspiration necklaces to the Sarcoma Foundation of America. Luckily for me and the Sarcoma Foundation of America, Andrea has a huge heart and was happy to help. I think these make any excellent gift for anyone. Who doesn’t need a little reminder to have more “hope”, “faith”, “courage” or “love” in their lives? I’m still trying to decide if I want mine to say “faith” or “survivor”. I may just have to do one of each! I hope you’ll wear one of Andrea’s necklaces proudly and know that you helped support important research that often receives very little funding or awareness.”

 



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