I am the lucky mother of ten extraordinary children and a husband who is my soul mate. For some time I have wrestled with the idea of a blog. I enjoy my privacy and dislike being the center of any attention. However, I do love helping others. It is heartbreaking to hear stories of those who have been misdiagnosed, sometimes for years and those who are told they are cured, only to find out their tumors return with a vengeance. There are many with advanced disease. I hear too many stories of young people dying with this disease. This should not be the case. So, with the arrival of spring and our cherry tree and the compelling thoughts written by my family, I will venture into an area I have not gone before.....
One of my great loves is classical music. I am also a pianist and enjoy learning new pieces. Although I choose a variety of composers, nothing excites me the way Bach does. His music is incredibly intricate though there are many thoughts flowing through a piece. One technique he uses is discord. This may come as a surprise to many people as he was a baroque composer. He takes a theme with several voices and weaves it through, using dissonance to allow a tension that gives height and depth to the piece. It is not the dissonance you notice when listening to his music. The beauty of his music is captivating and there is a deep sense of fulfillment as he brings the piece to an end with resolution in the final chord. I can hear myself say ah, it is done.
For me, carcinoid is a dissonance in my life. I am slowly learning to weave it into the movement of each day. It is a tension that helps me see life in a new way. I have a heightened awareness of the needs of our patients. Interlaced are the strong threads of my wonderful family and friends. I will continue to play the theme, but it will be more diverse and my passion will be deeper......until with research and knowledge there will be a cure for carcinoid bringing resolution for so many. I wait for the final cadence.
Some facts about me. Yes, I did give birth to all ten of our children. No, none are adopted. 33 years ago it was love at first sight, and still is!
A few years ago I started experiencing episodes of flushing.( I was not menopausal) Sometimes people would ask me how I got my sunburn. A dermatologist thought it could be rosacea. I also had asthma and shortness of breath with exercise. This was disconcerting as I had been an athlete for years. I went to see a GI doctor for reflux and was diagnosed with gastroparesis. He noticed my flushed face and asked if I flushed frequently. While having an endoscopy I had an episode of intense flushing. He suggested I might have a neuroendocrine disease. (At the time I thought it was impossible) Months later, at the insistence of my husband, I had labs drawn. I had abnormal lab values with chromogranin A, gastrin, pancreatic polypeptides, and 5HIAA. I had a neuroendocrine tumor removed from the appendix in Dec. of 05. In January of 06 the labs were redrawn and the lab values had risen. The flushing episodes continued. Carcinoid was not seen on scans. I later learned you can have metastatic disease and not have it appear on scans. I started on LAR in March of 06. Three months later I had labs drawn. With the exception of the 5HIAA, everything returned to normal values. My asthma and reflux improved and the flushing episodes are greatly diminished. On a bone scan there are two areas that light up.
Currently, I receive Lar 30 every two weeks. That, is the nitty, gritty about my carcinoid. I continue to live a full and busy life. It is true there are some days I am not up to par, but for the most part I am incredibly fortunate to live a wonderful life. It has made life more complicated, especially for those close to me. Their worries and fears are often concealed from me. I wish I could whisk their worries away with the dawn, but I know not how. I only hope they know how much I care for them and for now we must make the most of each day. There are so many to help in this world, let us go forth.
