I’d been having intermittent tailbone pain for quite a while. “My clothes hurt,” I told my general practitioner one day. He gave me a round of steroids, but they didn’t help for long. Next, I went to see a neurosurgeon who conducted an L4/L5 fusion, which also offered only partial relief.
In 2017, my wife Susan and I went to a church fundraiser; it was my first time dancing in a long while. We were doing the “Wobble.” I hopped, and had the sensation that something moved around uncomfortably, so I had to stop. Soon after, the pain became excruciating and I couldn’t pass urine.
I called my neurosurgeon, who told me to go to the emergency room. An MRI found a mass which was suspected to be chordoma. She told me I’d have to go out of state because I needed more specialization than existed in South Carolina. She knew how challenging chordoma can be to treat because of how uncommon it is, and I started to wonder what it was going to be like to have a rare disease.
The week before Christmas that year, I found the Chordoma Foundation and their list of experienced doctors. In February 2018, I flew out for surgery at MD Anderson Cancer Center (MDACC) with Dr. Laurence Rhines. I woke up from surgery in a lot of pain. I stayed in the hospital for a month, doing physical therapy sessions three times a day. On my last day in the hospital, I got to try a cane instead of a walker.
That summer, we worked back toward normal, and I was getting around without a cane, but I felt like there was still a problem. Sure enough, a monitoring scan in October found a new tumor in the soft tissue to the side of the original spot. I tried to be pragmatic and move forward, but it was rather discouraging. I had been thinking, I’ve done all this work, it’s done and dusted, we’re going to get on with our lives. No one wanted to do another surgery, so proton beam therapy was suggested. I returned to MDACC for 35 sessions. Physically, it wasn’t too hard on me, but I did have some fatigue.
We got home in early 2019 and I started to recover. Follow-up scans showed swelling or growth — it was hard to say. But summer was pretty good! We went on vacation with our kids and grandkids. That year, both my MDACC medical oncologist and my local oncologist recommended I try afatinib. I’ve had some side effects from the drug – intestinal, skin, and nail issues – but it seems to work well for my five tumor locations, which are either stable or slow growing.
In October 2019, I started experiencing a lot of pain again. I was diagnosed with sacral insufficiency, meaning a crumbling/cracking sacrum and nerve issues. Eventually, in mid-2020, I had spinal stabilization surgery, which involved screwing titanium bars from my pelvis up my spine, which resolved much of my intense nerve pain.
A couple of years ago, Susan and I moved to a single-level home, which has been great. However, this disease leaves us with really deep scars. Once you start messing with nerves in the sacrum, life is never the same. But as the saying goes, you’ll never know how strong you are til being strong is the only choice you have.
Along the way, the Chordoma Foundation and chordoma community have been a really good resource. When you consider the small number of people affected by this disease, the breadth of resources the Foundation has available is fantastic.
I’m a deacon in the Catholic church, which has given me skills for guiding others. I’ve applied my training in spiritual direction to becoming a Peer Guide, and the Foundation does a great job with their Peer Guide training materials. I’ve been matched with a number of people, and I try to help them frame things positively without sounding too “Pollyanna.”
There’s a time to say, “this sucks, this isn’t fair.” But if you become so interior-focused, your mood collapses, so it helps to re-focus on the right things as you go through this. You can let it overwhelm you, or you can find a way through it. And being a Peer Guide who helps people find a way through it really encouraged me. No matter what you’ve been through, you can find some way to give back. For me, being a Peer Guide is the right fit.
I’m also in the National Cancer Institute’s natural history study of chordoma. When you realize there are only about 300 cases a year in the U.S. for researchers to study, that’s just nothing. We need everybody in these studies; there’s simply not enough of us for any of us to sit on the sidelines. Our participation might not benefit us today, but we hope it will — and it’s incumbent upon us to do what we can for ourselves and those who come next.
We invite you to share your Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.