The Zebra Ball ’08!
 
Hi Everyone! Saturday’s Zebra Ball was another great success. I’ll post more of the details on next week’s blog and will hopefully have more information on how much was raised. For now, I am posting my speech from that evening. I hope you enjoy! All my best, Kari When Sharon asked me to speak again at this year’s Zebra Ball, I was certainly honored for the invitation; a little bit surprised but also gratified – I guess that means I did something right last year. I’ll be honest – I was very nervous last year leading up to the speech. This year it comes a little easier. Perhaps because this year I recognize so many faces and I feel as though I’m apart of a community. For those of you that weren’t here last February, I’ll share with you briefly how I came to where I’m at today. I was diagnosed in May of 2006. I went through years of misdiagnosis and was ultimately diagnosed as Stage 4 because the primary tumor in my small intestine had metastasized to my liver. It took nearly 8 years after I began showing symptoms to get my diagnosis. After being diagnosed I was treated by my small town oncologist, who had some experience with Carcinoid, but not a lot. Still, I trusted him and appreciated his efforts he put into getting me better. I had a small bowel resection and endured 8 rounds of intensive chemotherapy. It didn’t quite hit the mark, but we made some progress. Since then I’ve been participating in a clinical trial at Northwestern Memorial Hospital here in Chicago, all the while getting the usual dose of Sandostatin as is prescribed to almost all patients with the Carcinoid Syndrome, like myself. The clinical trial has proven to be successful in my case, but I can still only claim that my disease is just “stable.” I still have some active tumors in my liver, but they are smaller and there has been no progression of the disease. Hey, I say “stable” is the new “remission” for carcinoid patients. When I look back to my speech I gave last year, I realized that even though I strived to know as much as possible about my disease, there was still so much that I had yet to learn. For instance, did you know that it was just over a hundred years ago that the term “carcinoid” was coined by Munich pathologist Siegfried Obendorfer. In 1907 he gave neuroendocrine tumors the name Carcinoid because of their “carcinoma-like” behaviors. Although they were slow-growing tumors, and until that point considered benign, he was able to tell through his microscope that their cell structure was the same as malignant tumors. Although that was 100 years ago there is still much to be discovered in this area of research in order to find a cure. In that same amount of time, tremendous amounts of money and effort have been focused on finding cures for other cancers, but not on finding one for our own. It wasn’t until 40 years ago when the Carcinoid Cancer Foundation was established that there was one specific organization doing research and educating the medical community on this rare and often misunderstood disease. You know, the Carcinoid community is much larger than I initially imagined when I struggled to find just one other patient with my disease. However, it seems the most important lesson I’ve learned over the last year is that there are a lot of us. And yet, at the same time, it only takes one person to make a difference. For example, I’ve met a remarkable young lady who is leading her own support group and organizes Carcinoid conferences for both patients and the medical community, all because her mother has this disease. I’ve met patients that not only lead groups, but have established nationally recognized Carcinoid awareness networks and Neuroendocrine Tumor support groups. It’s incredible what one person can do with the support of others. It was by meeting these individuals that I was inspired to make a difference as well. In May of last year, I participated in my first mini-marathon, and I’m not really a runner. Heck, I’ll say it – I walked most of it. It was the Indianapolis 500 Festival mini-marathon, the largest in the country with 35,000 participants. What a great audience to introduce Carcinoid cancer to. I wore my own specially designed t-shirt: “Ask me about my Zebra”. Of course, the attention came easy, as my best friend Julie was right beside me telling everyone we met “She just finished chemo! She’s doing awesome!” Life sure is easier when you’re surrounded by cheerleaders! So we got the word out that day. We even came across one nurse who had already heard of carcinoid and she began to tell others around her about the disease. In July I created my own website to reach out to others, to offer inspiration and support to carcinoid cancer patients and caregivers. Not a week goes by now that I don’t receive an encouraging email from a new reader, reinforcing that we are not so rare after all. There are many of us out there who continue to have hope, all while still searching for answers. What I’m most proud of from the last year, was teaming up with my older brother to raise funds for carcinoid research. My older brother Josh had already participated in 5 marathons, but this last year he decided to run the Chicago Marathon in my honor. Throughout the summer we raised over $3600 in donations. As many in this area can recall, it was a grueling event and the hottest one on record, it was even called off part way through. I remember Josh telling me that at around mile 20 he felt as though he had a huge weight on his shoulders, an extra 50 lb bag on his back. But he didn’t quit. He was a true inspiration to me that day. This last year has really opened my eyes to giving back and working hard to make a difference, even if its just one small step at a time and you feel as though the weight of the world is upon you. So as you’re sitting out there, you may now be asking yourself, “what can I do?” Well, you’re already doing it. Just by coming out tonight and showing your support you are making a difference in the life of a carcinoid patient. Feels good, doesn’t it? Makes you smile just thinking about it. That’s because I think deep down inside we all have the desire to help others and to give what we can. We can all be inspired by the words of Helen Keller “I am only one, but I am still one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.” Thank you all for your continued support, and for coming out tonight to support this great cause. Thank you.
Monday, February 11, 2008