3:09 p.m. Today is the 47 month anniversary of Janes death. Normally, I would spend a portion of today at her grave but, as we used to say to each other, Our work is with the living. But very month, I write a special piece about my progress since her death and try to put her death in a larger perspective. That piece was published separately from what is here, and I would encourage you to read it during this hour of the mediathon. Our next patient piece is by Kara Daniels was diagnosed about a year before Jane was. She is a member of our Marathon Walk team and raised over $2700 for that effort. She was one of eight Pacesetters on our team, which raised $66,770 this year. She walked five miles, despite her cancer. Never say zebras arent tough. Karas Story When I agreed to write about my carcinoid experience, I thought this was going to be a lot easier than it actually is. It’s a journey that has taken me through 27 CT scans and over 70 chemotherapy treatments, not to mention ultrasounds of my neck and an upper endoscopy “just to be sure.” It took me a long time to actually say that I have cancer and an even longer time to say that I am receiving chemotherapy. I had never even heard of carcinoid or neuroendocrine cancer when I was diagnosed a little over 5 years ago. Although at this point I can’t recall how long I actually had symptoms for, I feel very fortunate in the fact that once my symptoms persisted on a daily basis, I was diagnosed and began receiving treatment all within 2 months. I was diagnosed with metastatic carcinoid in September 2009 after a two-month workup for Crohn’s disease, Irritable bowel syndrome and Celiac disease. By the time I was diagnosed, I had diffuse metastasis in my abdomen, in addition to metastasis to my liver, outside my right lung and to my pelvis. I have been on a clinical trial for the past four and a half years, for which I go to Dana-Farber every three weeks for blood work, to see my physician or NP and to receive chemotherapy. I have just recently read that carcinoid is considered the “Look good cancer.” Shortly after I was diagnosed, a friend of mine told me she overheard someone talking one day about the fact that I have cancer. This other person proceeded to say “There’s nothing wrong with Kara, she didn’t lose her hair.” No, I haven’t lost my hair, and if you didn’t know me, you would never know I have cancer. I have continued to work through all of this and lead a very active life. It is the internal struggle that people don’t see. Living with the side effects and lifelong treatment of carcinoid does provide many physical and emotional challenges. There are days when I really don’t have a lot of energy and sometimes it takes me longer to do certain things than it used to but still, I try to not let that stop me. A very dear friend of mine passed away the beginning of the year from cancer. She was a great support to me and told me when I was first diagnosed that it was OK to have a pity party every now and then, which yes, I do. I am fortunate to have the support of my family and close friends. I have to admit though, that there are times when I feel even my friends do not understand how I feel because I “don’t look or act sick.” People who would call me before my treatment to wish me luck or contact me afterward to see how everything went no longer really do that. That is the hardest aspect for me to deal with. It is very difficult for me to live with the uncertainty of my cancer’s progression. I hold my breath every ten weeks when I get my CT scan results. I wonder every Christmas when I decorate the tree if this will be the last time I’ll ever do this. I hope to be able to see my son graduate from high school, college and to get married but there is a realization of eventually what will happen. Each day now offers a new challenge and I have learned to realize the tough times for what they are and have learned what truly is important. There is a quote that says “You never know how strong you are until being strong is the only choice you have.” I can’t change the cards that were dealt to me but, in some way, I feel I have become a stronger person because of it. --Kara Daniels
Posted on: Mon, 10 Nov 2014 20:32:44 +0000
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