My story is complicated with a lot of twists and turns. I’ll do my best to write the condensed version, but there was a lot that happened in the early days of my chordoma journey, and there has been a lot that has happened in the last eight years. None of it was easy, but all of it has been manageable and survivable—and thankfully, I am still here to write about it with no debilitating side effects.
I was officially diagnosed with a sacral chordoma tumor in July 2017. But unofficially, I believe my chordoma story began in September 2009. I was experiencing some random twitching in my legs and feet and went to my primary care physician to see if he could determine what was causing it. He referred me to a physical therapist who performed a nerve study on my legs. Nothing conclusive was found at that time, but the therapist indicated the twitching I was experiencing was very odd. Two days after that appointment, my middle daughter was born, and I never followed up with further testing.
The twitching never really went away, but I was too busy with life. I changed jobs right after our daughter was born in September 2009. I changed jobs, we moved, we hosted an exchange student from Ukraine in 2016, and then we had another baby in 2015, I changed jobs, and we moved again. In early 2017, I was beginning to feel pain in my tailbone. I had a hard lump form that was painful to sit on. I went back to my PCP, who said, "Ooohh. You have a lump back there." He referred me to a local surgeon who, today, I call the "cowboy surgeon." He "rode in on his shiny white horse with 30+ years of surgical experience" to save me. I had never had any serious medical problems and had absolutely no reason to doubt his advice. He drained my “cyst” twice before scheduling me for surgery to remove it. The two-hour procedure turned into a six-hour ordeal. He came out and told my wife, “In all my thirty years of doing surgery, I’ve never seen anything like it. So I hacked a piece off [my words] and sent it off to be biopsied.” I never saw him again. His surgical assistant gave my wife and me a copy of the biopsy report saying “chordoma,” along with a copy of a Google search on the term. Thank goodness the Chordoma Foundation was the number one search result that popped up.
A Chordoma Foundation Patient Navigator gave us their list of vetted chordoma doctors, and the best option for us was at Mass General Hospital (MGH) in Boston.
Before visiting Boston, I had a phone conversation with Dr. Norbert Liebsch at MGH. He walked me through a list of information he wanted us to collect about my family's and my medical history. It was through that exercise that I reached back out to the physical therapist who had done the nerve study on me eight years earlier to get a copy of that medical report. While I have no proof of this, and the physical therapy report did not show it, she was convinced that—given my diagnosis—the twitching in my legs and feet was likely due to the early stages of the tumor pressing on my sciatic nerve.
My diagnosis and botched biopsy were done in July 2017, and we were able to schedule a consultation with MGH in August 2017. That month was one of the longest of my life. The initial cancer diagnosis was shocking. All the fear, uncertainty, rage, “why me, why now…” heartache was constantly on my mind that entire month while we arranged to make our first visit to Boston. I had numerous conversations with my wife, my children, my family, my friends, and with other chordoma patients telling the story about how we came to learn I had this “thing” called chordoma. Over the years since my initial diagnosis, I now relate having cancer to the "cloud" that Elsa gave Olaf in the movie Frozen to keep him from melting in the summer. In my case, my cancer cloud is light and fluffy some days, dark, stormy, and ominous on others. Like the weather, it comes and goes, but no matter what state it is in, it is always there, lurking around.
On my (our—my wife Robin has been by my side throughout) first visit to MGH, I was scheduled to meet with Dr. Joseph Schwab. We arrived at MGH and were only expecting to meet with Dr. Schwab. Instead, we met with the entire chordoma team, which included Drs. Delaney, MacDonald, Fiore, Bojovic, and a couple of other doctors I do not remember. It was very reassuring to have so much expertise taking on my case, but also overwhelming to meet with so many different doctors and staff on the first day. But at the end of a two or three-hour appointment, we walked out the door with a plan to deal with the beast. And in those few short hours, all of my fear and trepidation about my cancer diagnosis was put at ease. I remember how my anxiety about how we were going to tackle this beast shifted from fear to impatience. I couldn’t wait to get started to get this “thing” out of my body.
The plan was to do thirty doses of proton and photon beam radiation, followed by surgery to remove my rectum and create a colostomy, then resect the tumor, and then do twelve doses of additional radiation to kill any lingering cells in the affected sacral area.
Radiation started in September 2017. I rented an apartment for eight weeks and began my treatments. I went home for a month in October 2017 and returned to Boston in November 2017 to begin the surgeries. The expectation was to be in the hospital for about three to four weeks, but due to complications with my kidneys and infections in the skin grafts, I was at MGH for 58 days. That meant missing Thanksgiving and Christmas with my kids that year and getting discharged in late December in Boston in the middle of a blizzard. Let me tell you—hospital scrubs, a sweatshirt, and a blanket are not warm enough to endure a four-block drive in a wheelchair van to an apartment.
From there, I flew back to NC to recuperate for twelve weeks before returning for the follow-up radiation doses. My return coincided with our first Chordoma Foundation Conference in March 2018 in Boston, which is where we were blessed to meet a lot of patients, caregivers, doctors, and Chordoma Foundation staff.
I had no metastatic tumors in the original sacral region or anywhere else for over three years. In 2021, CT and MRI scans began showing metastatic tumors in my lungs and back muscles. I have had lung surgery to remove small tumors, and I had a large tumor in my back frozen via cryoablation. I have more small tumors popping up in my lungs and back that I have to decide how to manage in the coming months, but in general, I am happy with where I am.
It has been a long journey, but with the help of my wife and kids, great doctors, and fellow chordoma survivors and caregivers, I’ve had a lot of people to lean on to get to where I am today. It has been a battle, and as I said, my chordoma cloud is always with me—but more days than not, the cloud stays light and fluffy, and I plan to keep it that way for years to come.
The Chordoma Foundation has been a huge help. I cannot imagine where we would be if that initial Google search had not directed us to the Chordoma Foundation. Without the assistance of the Patient Navigator at that time, my wife and I would have had no idea where to turn for help. A local neurosurgeon we were referred to flat-out said, “I have zero expertise with this kind of tumor and cannot help you.” But with the Foundation’s help, we were given multiple doctors and hospitals to reach out to in order to plan our treatment strategy.
In addition to attending our first community conference in Boston in 2018, we also attended the community conference in Chicago in 2019. These conferences—and the Chordoma Support and Survivors Facebook page—have kept me informed of options to participate in clinical trials, the results of some of these trials, and the opportunity to fill out surveys to help with future research. As we all learn on this journey, chordoma is rare, and knowing that there is a “home” to go to for help is very reassuring.