I want to tell you about chordoma. Chordoma is a kind of cancer. Chordoma develops in cells of the "notochord" — the prenatal building blocks of the spine. Most notochord cells turn into other types of cells or disappear, and some are left behind in areas of the spine. Most of these cause no problems, but life is imperfect and sometimes — but not always — those notochord cells develop into chordoma cancerous tissue.
I have had back problems all of my life. Beginning at 15 years of age, I've had periodic bouts of lower back spasms unrelated to my eventual chordoma diagnosis at 58 years old.
I have three things wrong with my back: an "extra" L6 vertebra (you are only supposed to have five), arthritis with stenosis (narrowing of the spinal canal), and chordoma.
But fortunately and weirdly, these problems "went away" for 40 years. From 18 to 58, you would only have seen me as a big, strong man. I went to boot camp twice (1989 and 2002) with the USAF and USCG, and did all the push-ups, sit-ups, and running expected of an active duty soldier. I ran 5ks for the March of Dimes in my early 30s. I marched 8 miles every Mardi Gras in New Orleans with the District 8 Color Guard of the USCG. I was Captain of the Color Guard, drilling as many as 40 Petty Officers in parade movements and manual-at-arms.
My back hurt periodically, but I dismissed it as arthritis in my 50s. I had been diagnosed with arthritis and x-rays clearly showed it. I ate ibuprofen and it seemed to work. Honestly 98% of my life was pain-free - until it wasn't.
Beginning in November of 2023, my back pain became more constant. Ibuprofen alone wasn't working anymore. But the most troubling thing was that the surface of my right thigh (all along the top midline of the thigh) began searing with pain, and then went numb. I went to the VA, where it was largely dismissed as advancing arthritis, but "just to be sure" they ordered an MRI. That MRI revealed a large tumor on my L2 vertebra. It looked like a big piece of cauliflower attached to my spine. I was (and am) terrified.
On July 28th, 2025, my 59th birthday, I had en bloc resection: surgery to remove the tumor and the L2 bone it was growing from. The neurosurgeon installed a spinal fusion, and I'm still recovering from that surgery. I can only walk briefly, but I am mostly out of pain as long as I sit still on a reclining chair.
I learned last week that much of my tumor remains embedded in my right psoas muscle. We are going to attack that tumor with proton beam radiation therapy after New Year's. The bad news is that the remaining portion of that tumor is growing - and has grown - since the surgery in July.
I don't know what the future holds. I will fight for as long as I can and live as long as I can. Maybe that's a year or two - or maybe that's ten years or more. We do not know.
