In the summer of 1990, I was 16 years old and attending summer school. I had been having terrible headaches for about two weeks. The headaches were so bad that I would just put my head down on the desk after finishing my work. I tried Tylenol but it was no help. One night I asked my father, Paul E. Lea, Jr., if I could see a doctor about it. The primary care doctor ordered a CT scan. The first CT scan was followed by a few more CT scans and then a couple of MRIs. After about a week or two, my father told me that the doctor said I had a tumor in my head.
My first visit was to a neurologist at Norfolk General Hospital. He sent me to a neurosurgeon, Dr. Gudeman. Dr. Gudeman proceeded to tell me that I had a very rare tumor of the bone that he thought was usually found in male patients and usually upon autopsy. He told me that he would perform an experimental surgery in which he would go in through my mouth, take out my soft palate and uvula, and go through my sphenoid sinus to remove the tumor that was on the bone at the back side of where my pituitary was sitting. At the time of my surgery, the chordoma was one millimeter away from my brain stem. They removed most of the chordoma on October 31, 1990, but they could not remove it all.
In December of 1990, I had a check-up MRI, and they found that the tumor had grown back to its original size. They recommended that I have radiation therapy. So, in August of 1991, I began proton and photon radiation at Massachusetts General Hospital under the care of Dr. Norbert Liebsch. I was told that there was a 50% chance that this would work and we would find out during my check-up in one year. I also signed a piece of paper stating that these things might happen to me in the future: hormonal issues, hearing loss, vision loss, and even death (I am sure there were more but I cannot remember them all). I was fitted for restraints so that I could be strapped down to a chair at the Harvard Cyclotron. There were so many others there during my experimental treatment. One of the patients was a 6-year-old girl who had almost died twice before they could remove the tumor.
I underwent treatment from August to mid-October 1991. I spent four days a week going through proton therapy at the Harvard Cyclotron and one day a week going through photon therapy at Mass General. I had a total of 760 gigagrays of radiation. I was blessed enough to come back and find no tumor growth, even though they could still see residual tumor. I continue to be this way now in 2024.
I am doing well now. I have had many setbacks: bi-lateral hearing loss (I just use hearing aids), pituitary, thyroid, and adrenal issues, HGH decrease (almost loss), sphenoid cyst, sinus issues, double vision, depression, four strokes and three aneurysms. One of the strokes caused a sixth-nerve palsy in my left eye.
I have had an amazing support system throughout this journey: my father, who has been through everything; my husband, James Duke, who has supported me no matter what came my way (we married in 2005 and had a child — which I was told I would never be able to have); and my family and my friends who have all been there for me through thick and thin.
I connected with the Chordoma Foundation rather late in my journey but I have used their resources to find information and to even locate specialists. On the online support group I have met others going through issues that just needed to know that they are not alone, and that there is HOPE! The most important thing for me is to remain positive: never give up hope or your dreams. Keep living life!
