Through this story, it is my desire to offer hope and knowledge to any young person diagnosed with a chondrosarcoma of the cricoid cartilage, as well as positive treatment information from a patient's point of view. This tumor is rare and mainly affects older men who do not typically need treatment since it is a very slow growing tumor.
Sixteen years ago in 1988, my voice began to get raspy. I was 38, married and the mother of three young children. Our family was living in Marietta, Georgia, and I was teaching at my children's elementary school. Thinking I needed to adjust my thyroid medication, I made an appointment with my endocrinologist, who told me that allergies were to blame.
A year later when we moved to Omaha, Nebraska, my voice had not improved, and I was having a difficult time exercising. Again, an internist pointed a finger at allergies. I trusted that the diagnosis of two physicians must be correct. It never occurred to me that I was dealing with a serious medical issue. At the end of 1989, after an unusual and uncharacteristic bout with claustrophobia, I was referred to Dr. Trent Quinlan, an ear, nose and throat specialist. After a regime of antibiotics failed to improve my breathing and voice quality, a laryngoscopy showed a paralyzed left vocal cord and a CT scan revealed a small tumor of the larynx in the cricoid cartilage.
In February 1990, I spent seven days in the hospital, after undergoing major surgery to open my voice box, biopsy the tumor, and have a tracheotomy. The tracheostomy tube was removed before I left the hospital. The diagnosis was a chondrosarcoma of the cricoid cartilage. The only way to completely remove the tumor was to remove my voice box. Given my age, good health, and information that this tumor would not metastasize, a decision was made to debulk the tumor. Dr. Quinlan removed as much of the tumor as he could without compromising and collapsing the airway.
So began my medical journey with Dr. Quinlan, a wonderful doctor who is not only a kind, compassionate and caring man, but also a cautious and brilliant surgeon. About two months following my surgery, I underwent another procedure to revise my scars, which then healed nicely. My left vocal cord was permanently paralyzed, which compromised the quality of my voice, but I was still able to continue working as a preschool teacher, as well as fully participate in the lives and activities of my children.
The tumor was tracked with CT scans and exams during the next five years. In 1995, I again had major surgery, had the tumor debulked, and another tracheotomy was performed (which, as the first time, was removed before I left the hospital), and underwent more scar revision surgery.
My wonderful quality of life continued and I was able to watch our teenagers become young adults. I was able to celebrate their high school graduations, and later, the college graduations of my sons.
It was while our daughter was in college that I started wheezing. Although the MRI and CT scans did not detect any tumor growth (probably because of the distortion caused by previous surgeries and scar tissue), the wheezing became worse. In October, 2002, I underwent my third major surgery. My airway had narrowed so much that a stent was inserted for a week, and I had my third tracheotomy. After complications arose, I spent two weeks in the hospital, but had the trach removed before I left.
However, two weeks later, my airway collapsed, and I was rushed to the hospital for emergency surgery and, to my great disappointment, a trach was reinserted. Despite these measures, there were still problems with both my breathing and the trach.
This was a very difficult and emotional time in my life and in the life of our family and close friends. I was trying to stay strong, both emotionally and physically, but I was clearly discouraged. Between October, 2002 and January, 2003, I was in the hospital for a total of six surgeries - some out-patient, others that required several days in the hospital - and I was continuing to lose weight. I wanted to deal with this crisis in the best way possible, not only for myself, but for my husband, our children, our family and friends. It was also during this time that my beloved younger sister passed away. We talked and emailed daily and I missed our constant communication and source of comfort.
I was so blessed with a wonderful support system, not only during the time I spent in the hospital, but also while recovering at home. My wonderful friends visited me daily and brought many meals for our family. Our children, including our future son-in-law, put their personal lives on hold to make many visits home in spite of pressing college courses and long distance commutes.
In January, 2003, a different kind of tracheostomy tube (Montgomery T-tube) was inserted that held my airway open and my breathing steadily improved. Unfortunately, the trach did not allow my good vocal cord to close, and I spoke in a whisper voice for the next nine months. Despite this, I made a decision to live my life as completely as possible. Celebrating the engagement of our precious daughter and her wonderful fiancé, and their graduations from college were wonderful distractions and brought tremendous joy to my life.
Luckily, as Dr. Quinlan was hoping, scar tissue hardened around the trach that supported my airway, and in September, 2003, the trach was removed. In November, I had revision surgery once again, and my scars have healed nicely.
I am looking forward to working again, but because of my voice quality and medical history, I worry about insurance coverage and my future earning ability. It has been one and one-half years since the last debulking, and I am hopeful the tumor will not grow back. Despite these worries, I am grateful for many things. There is no question that having a terrific support system has been essential to my recovery. I have gained back the weight I lost and am able once again to fully enjoy my life. I work out about five days a week, walking on an elliptical trainer and lifting weights. Two of our children will be getting married this year. Life is good. I know I am blessed.