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.
3 comments:
Cathy I am so sorry to hear you've been diagnosed with this. Someone sent me this link. You have been on my mind a lot since then and I want you to know I am praying for you and thinking about you also. Last year our daughter Meaghan was diagnosed with MS so I know how these sicknesses can affect the whole family. It really gives meaning to that old song "One Day at A Time". Your family looks lovely and you must be so proud of them all. God bless you all!
For God commands the angels to guard you in all your ways.
With their hands they shall support you, lest you strike your foot against a stone. Ps:91
Sharon Kinnee (skinnee@timelesstech.com)
Ah, I finally figured out where your blog was hiding. Jesse helped me discover its location. First, you are an incredible woman and an inspiration to those who meet you. That you have brought ten extraordinary children to adolescence and adulthood is amazing in itself. Your children are obviously your pride and joy, a remarkable reflection of you and your husband.
I am not a musician and cannot speak the precise and technical words of a musician, but I can feel and hear the harmony you have created in your children. They hold themselves to a higher standard, a standard of goodness and honesty. They love you dearly, and they have embraced your struggle with courage and grace. They are a blessing to all who meet them or read their deepest thoughts.
I understand your concerns; I do not have any answers. I can only tell you that I found great peace talking to God and asking him to hold my hand and to pull me through whenever I felt like I was stumbling. I asked him to protect my children, my greatest joy. In surrendering myself to him rather than to the anxiety and pain, I was able to focus and to appreciate the blessings around me. That is not to say that I was able to do that every second, it was work to maintain that frame of mind. But in the end, it was prayer that buoyed me, God's love that comforted me, my family, friends, and doctors who cared for me, and my own determination and perseverance that pushed me forward. You already have all these notes in your life's musical score. Now continue to play your song, a song of hope, a song of love, a song of life.
You are in my prayers.
Love, Marianne McMillin
Cathy, I stand in awe of you and your family. I cannot describe in words the joy and love that you and your family bring to ours. You continously open up your home and your hearts to us and for that we are forever in debt. In this rat race we call life, you guys have to be leading the pack. Yet you always find time in your busy life to give to others. You are truely an inspiration to all those that cross your path. We just want you to know that you are in our thoughts and prayers each and every day and we stand ready to help you guys with whatever you need. Even if it's just a silent ear to listen to your thoughts.
I enjoyed your submission in your original post about your love for music and how it moves you to knew heights. I am not a musician so I cannot appreciate the things that you hear in composers such as Bach but I am moved by music, all types of music. I knew your kids were super talented when it comes to musicians but I had not idea that you played the piano. I would love to hear you play someday. I find myself searching for inspiration in a world filled with gloom and doom. Few things move me these days but the ones that do come to mind are family, music, and inspiring people. You embody all of those qualities.
I know I'm rambling and I'm searching to find the words to say. My heart goes out to you and I hope you know that we love you guys and consider you family. Again, we stand ready to help you guys in whatever it may be that you need. Know that we are here and feel free to reach out to us. We know you would do the same. I'll close with a great quote I saw on a picture hanging in your office today: "Happiness is not having what you want, it's wanting what you have......."
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