Chordoma Foundation

Lindsay’s Uncommon Story: I gained a tremendous sense of self

Lindsay Rubin Roman

Lindsay Rubin RomanLike most single, young women living in a big city on their own, I couldn’t foresee anything threatening the bright future ahead of me. But my life turned upside down one morning when I woke to a blurry vision. Within an hour, the symptoms progressed to a severe headache and nausea, and a brief episode of numbness in my left hand. The instructions from my doctor’s office were straightforward: Come here now. Don’t drive your car. My doctor performed standard neurological tests in her office, but couldn’t find anything suspicious. She said she rarely ordered MRIs, but wanted me to have the test to put her own brain at ease. A few days later, I got a call at work I was never expecting: “It’s a good thing we did that MRI after all. You have a mass in your brain, and it needs to come out.”

The next day, a local neurosurgeon explained that the tumor was on a bone at the base of my skull called the clivus, measuring 3x3x3 cm. Still dumbfounded, I saw three additional neurosurgeons from top medical institutions, who all suggested different approaches with varying prognoses. With no consensus, I realized it was up to me, a layman, to make a medical decision that would affect the rest of my life. Research led me to an expert who was confident that I had a chordoma, a rare, slow-growing tumor comprising just 0.2 percent of all brain tumors, less than 200 people a year. He told me that my treatment, involving surgery and radiation, would consume the next year of my life. Armed with this information, I refocused my search and sought a fifth and final opinion with a brilliant and compassionate team of surgeons – Drs. Chandranath Sen and Peter Costantino.

It took a tremendous amount of strength for me to schedule the surgery, and even more to walk through the hospital doors. After waking from the nine-hour operation, I wiggled my fingers and toes. Yes! I’m OK! But unfortunately, only half the tumor was removed and I would have to return six weeks later for another surgery of the same magnitude. I was devastated that I had to do it all over again, and almost gave up. Walking into the same hospital for the second time was the worst kind of déjà vu I’ve ever experienced. But this time I woke to good news: they got the whole tumor out! I followed my surgery with proton beam radiation at Massachusetts General Hospital, which at the time, was one of only two centers in the country offering the specialized treatment. I was humbled by the other patients I saw over the two months, some who were on the road to recovery like me, and many others, who were still at the beginning of their journey. My treatment culminated with a flight home from Boston on May 18, 2004, exactly one day shy of a year from that one and only day I had symptoms. As a side effect of the surgery, I permanently lost my sense of smell; but gained a tremendous sense of self. Years later I married the love of my life and delivered a healthy, beautiful baby girl.



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