The Zebra Ball was such a fantastic event. I don't have the final numbers, but from what I understand the Zebra Ball was a huge success. I had a great time with my family and friends. Pictures are forthcoming to the website - still need to get them uploaded. I was very nervous before my speech but once I got rolling, I think I did pretty well. Everybody said I did a good job. Brian said he was very proud of me, as did my father. What was also neat, was that the rest of the evening it was hard to cross the room, as each time someone new would stop to say how much they enjoyed my speech and what it meant to them to hear it. It meant a lot to me to be able to tell my story. I really feel like I'm doing something now to make others aware. Well, I don't want to carry on too long as I'm going to be including the text to my speech here, and it is somewhat lengthy (about 10 minutes in length). Please enjoy!

 

"My name is Kari Jones, and I am a carcinoid cancer survivor. I was diagnosed with the disease 8 months ago on May 31, 2006, just 3 days after my 26th birthday. To say that this disease has changed my life would be an understatement. It has not only altered it’s course, it has led me down a path that is still filled with questions, doubts, faith, hope and love. My favorite quote regarding cancer is from Lance Armstrong’s book and it’s one that I relate to greatly. He states: “The truth is that cancer was the best thing that ever happened to me. I don’t know why I got the illness, but it did wonders for me and I wouldn’t want to walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?” I couldn’t agree more. But first, let me tell you about the direction is which my life was headed.

 

In the spring of 2003, I was in my early 20’s and doing the things that many young women do. I graduated from Purdue University, began an exciting career with Hyatt Hotels and fell in love with the man that I would eventually marry. It was a time filled with excitement and hope for the future. We moved to Dallas that same year and by the spring of 2004, we began planning our wedding. I was also beginning to find success at my new job in Dallas, Texas. Everything seemed to really be falling into place. However, that same year I was having more and more unexplained abdominal pain. I went to several urgent care centers, a family doctor, and eventually a gastroentorologist; all in the search of what was causing my stomach pain. One thing you quickly find out once you’re diagnosed with carcinoid cancer is that 90% of the time, it is initially misdiagnosed. At one time we thought it was ulcers, due to the stress of a new job. I was also told perhaps it was a food allergy and to keep a food diary of every little thing I ate. That failed miserably, especially because I hate keeping diaries. It was frustrating but eventually, after having a couple of diagnostic tests completed and meeting with the G.I. specialist, I was told I had irritable bowel syndrome. Great! Finally an explanation. I was a bit disappointed to learn that I had a “syndrome”, that all this time it was all more about what I ate and the reaction to my stress levels than a real medical condition. But I learned a lot about the digestive system and about what foods to eat to avoid the painful stomach problems. The GI specialist mentioned to me that it would be a condition that I would have the rest of my life and that I should always mention it to drs when discussing my medical history. Because of my IBS diagnosis, I could tell you anything you ever wanted to know about a high fiber diet – including how it won’t cure cancer. Also, the change in diet seemed to help at the time and the abdominal pain seemed to be less frequent and severe. I was ready to move on with my life.

 

In November of 2004, Brian and I had a small wedding ceremony at a beautiful Hyatt resort in Key West, Florida. By the following July, we had relocated back home to Indianapolis, Indiana to be closer to friends and family. Everything was moving along swimmingly. However, I do remember that I was a bit embarrassed having to explain to my new boss that I had “irritable bowel syndrome” and that sometimes I got crazy stomach pain that might cause me to miss work. But, all-in-all, I was doing okay.

 

That was until about this time last year. The pain was getting more frequent and severe, and by the end of April I had dramatic weight loss. I found myself a new family dr and, of course, mentioned I had irritable bowel syndrome. Eventually I got frustrated that every time I mentioned my stomach pain, it was always regarded as IBS. When I went to the emergency room due to extreme back pain, the ER dr brushed me off and said it must be back spasms, probably because of the IBS. In reality, the tumors in my liver were getting so bulky that it was starting to push on another organ causing me to have back pain. I returned to my general practitioner a week later and told him I was fed up with it all. I have had IBS for two years and this pain cannot be IBS related. I was finally able to convince him that perhaps it was something else. He thought maybe it was my pancreas. He was concerned and ordered an ultrasound of my abdomen. I thought to myself: “Here we go again – another round of diagnostic testing.” But this time, they actually found something – and it wasn’t anything to do with my pancreas. My dr called me to say that he wished it was my pancreas, but instead what the ultrasound showed was several tumors in my liver. One measuring 5cm x 4cm across. It was certainly not the news we expected to get.

 

All of a sudden, things were finally moving quickly. Tests and scans were being scheduled with a real sense of urgency – something that I had not experienced to this point. In no less than 14 days from that initial ultrasound, I had a CT scan and a liver biopsy. The only thing that seemed to take too long, was waiting for the results from that biopsy. It happened to fall over Memorial Day weekend and my 26th birthday. We were telling ourselves that it wasn’t cancer. I was young and otherwise, very healthy. Being young really brings with it a sense of false security in regards to our mortality. We all “know” we’re going to live a long life. I couldn’t possibly have cancer. But here it came – my diagnosis: carcinoid cancer. Now, I’ve heard of breast cancer, lung cancer, leukemia, hodgkins and non-hodgkins lymphoma, and even some other more rare forms of cancer. But what the heck are neuroendocrine tumors and carcinoid cancer?

 

My doctor sounded as perplexed as I was. After reviewing his medical textbooks, he obviously understood what the disease was, but was in somewhat disbelief that I was diagnosed with it. Considering how rare the disease is and the fact that it is more commonly diagnosed in people twice my age, the chances of me having it were pretty slim. There are only about 8000 new cases reported each year. That comes to only 3-4 per 100,000 people per year. Compare that with the over 210,000 people diagnosed annually with breast cancer, or the nearly 220,000 men diagnosed with prostate cancer each year. The rarity of carcinoid cancer must be why no one ever thought to consider it as an option. As a side note, it turns out that your chances are better to have a professional football playing son than it is to have carcinoid cancer.

 

Once I got the diagnosis – everything finally fell into place and made complete sense. I previously mentioned my constant abdominal pain (a very common symptom) but the next most common, and almost always overlooked symptom is flushing of the skin. This is something that has been happening to me for years. I remember the first time it occurred was when I was a senior in high school – nearly 8 years ago. It definitely became more frequent and annoying over the years. Like in 2002, when I was in China spending time with my new friends. I had an episode and they asked why I flushed. I had no answer for them. It was something I could never explain. I didn’t understand what was happening to my body. As I met with my future bosses in interviews or, later on, in meetings, I would always get flushed. They thought I was just really nervous. Nerves had something to do with it, but then there were many times when I felt completely normal and it would happen. It was embarrassing not having an answer. I had mentioned it to doctors here and there, but mostly it was ignored as they focused solely on my abdominal pain, never thinking the two could be related. Eventually, I stopped mentioning it altogether, thinking it was just something I would have to live with the rest of my life. Really, it seemed harmless, more embarrassing than anything else. But by the time of my diagnosis, the flushing seemed to be happening 3-4 times a day, lasting from 2-5 minutes each time. Now, I know most people are probably very upset to get the diagnosis of cancer, but I can’t explain to you the sense of relief that came with it as well. I imagine that most carcinoid cancer survivors went through the same struggles with getting a diagnosis that I did. Finally having a diagnosis meant we were finally making progress, and now I have answers to all those unexplained symptoms.

 

I’ll be honest – I was upset about the whole thing, angry that it wasn’t diagnosed sooner, and I felt a bit defeated that it had happened to me. I asked the “why me” question more than once. My life, which seemed to be moving at a nice speed toward “the American Dream”, suddenly came to a screeching halt. I was confronted with the fact that my life may not last 70 years. According to the statistics, it may not last another five. But I am not ready to accept that part either. Instead of thinking my life is ending, I have made the decision to live it as if it were just beginning. I want to make my story known. This cancer is so rare and unknown, I want to make it my mission to make others, including other doctors, more aware. Even with all that I know now, I cannot go back and get an earlier diagnosis; one that might have meant a greater chance of survival. I know I cannot go back and change the past. However, I can hopefully help make a difference in the life of a future carcinoid patient. What I really want is for doctors to consider all the options. I want them to not only think of IBS, but to see all the symptoms, know all of the options and available tests. Doctors and patients should be more aware. I’m hoping that through our efforts, some future patient will get a quicker diagnosis because the right tests will be called for the first time, ultimately increasing his or her chance of beating this disease. I’m hoping that when that patient goes in for their first round of treatments, they will not have to explain to the nurses what Carcinoid cancer is.

 

One of my favorite songs these days is Colin Hay’s 1993 song “Waiting for my Real Life to Begin.” It’s strange what can inspire a person, but this song is ultimately what has inspired me. The lyrics speak of someone who is ready with a plan, someone who is waiting for his ship to come in so he can sail off and fight his fight. He’s waiting for his real life to begin. Except I’m no longer waiting for my real life to begin – I’ve realized that with my diagnosis it already has. I know there will be that call – the call to help others in my situation. I already have a plan and I am on my ship now fighting my fight.

 

I want to take this time to briefly thank Sharon Deveraux and her friends and family for organizing this event and allowing me to tell my story. Thank you, Mom and Dad, for staying with me everyday in the hospital and going with me to nearly every round of chemo. Thank you, Julie, for being my real-life angel and giving me a thousand reasons to laugh. And thank you, Brian, for being my reason to live.

 

And thank you all today for coming out and supporting this cause. With your help we can help make the medical community more aware. We can raise money for further research. We will be able to prevent another patient from slipping through the cracks of misdiagnosis. You are all now a part of my real life. Thank you for being that very important part. Thank you."