I was first diagnosed with sacral chordoma in 2008 accidentally during an MRI. The tumor was a big ball, and I remember the radiologist saying that he couldn’t tell what it was. What a shock! I thought, “Now what?” First thing the next morning, I looked for a good neurosurgeon. The medical team in Greece proposed that I go out of Europe to find the best treatment with a more experienced team.
At Johns Hopkins Medicine, I met the best human and doctor, Dr. Ziya Gokaslan, and the journey began. My surgery was 12 hours. They found a watermelon-sized tumor and removed it with clear margins and normal organ function. A miracle for everyone!
But the tumor came back and I’ve had three more surgeries at Johns Hopkins and underwent CyberKnife and IMRT treatment in Greece. Unfortunately, I had a colostomy and stereotactic radiosurgery and I’m on chemotherapy due to metastases.
But I’m still alive.
I used to be full of energy, giving lessons to my students, and being out all day. But now I can’t do the things I used to do — my soul wants to, but my body can’t follow. I have my family: parents, husband, and a 19-year-old son who support me, but at the same time I know I must cope with this alone. I have the best doctor in the world who knows me very well, and he always gives me hope and the best care. I’m hoping for a therapy to be found for all of us who are struggling for life!