I went to the Desmoid Tumor's annual conference this past weekend. What a weekend. Yesterday we heard 4 doctors talk about research and an ex-NFL football player talk about this own desmoid tumor. It was inspiring and scary. After 4 hours of talking about my tumor, I was drained. I left feeling hopeful with lots of new answers. I also felt like crying on several occasions. I was overwhelmed hearing stories of others who battled the beast.
Today my husband, Mom & Dad ran a 5k called Running for Answers. There were over 600 (I think more like 800) people there. The four of us raised just shy of $1000. Other teams raised $10-15k! The event raised over $150,000. It was moving to see so many people out in force. Desmoids get very little funding since they effect so little amount of people. It's up to private donations to keep research going strong and what a strong group of people we are.
At the 5K, I felt like people I didn't know where there to run for me. Running to support me and running to put an end to this nasty disease. Considering I started running about 8 weeks ago, I was pleased with my 5k time. Don't mind me if I brag a little. Running with an arm that doesn't swing has been a learning experience. My husband and I came in around 27 minutes! Under 9 minute miles. When I saw the finish line, I started to sprint. My feet felt like rubber but I pushed thru. I thought of all the times in the past year when things were hard, and pushed even harder. I crossed the finish line exhausted but smiling ear-to-ear. I had that feeling that you get sometime. You know the one. The one where you feel like you can do anything.
hi my name is Krystle. I am 24 years old and I have been battling my desmoid tumor for nine years now. I have had three surgeries but after each surgery, the tumor just came back faster. I started chemotherapy last may and i hated how it made me feel. Chemotherapy just stopped for me now because a second tumor has grown. It is a frustrating battle, and im really tired of trying to be strong every single day. I stumbled upon your site and it was somewhat reassuring knowing there are people out there who knows how i feel. I would love to have someone to talk to about what I'm going through because I know you will understand and vice versa. I am a graduate student in D.C. and I really wish I could have went to the conference. I'll probably start my own blog, thanks for inspiring me :)
ReplyDelete(the tumor is aggressively growing in my left leg)
ReplyDeleteWow! The conference sounds wonderful! To see there really is others with this tumor would be awesome. I wanted to go but life had other plans for me, maybe next year!
ReplyDeleteKrystle--I too have a blog. you can check it out at http://peacefulwillowfarm.blogspot.com
and my blog is now up and running at
ReplyDeletehttp://krystleberrigan.blogspot.com
happy reading :) i enjoyed yours as well.