“We’re all going to be different after chordoma than before. The idea with recovery is to get back to who you are – the spirit of what makes you you – whether you have complications or not. This book is about the journey of finding my way back, emotionally, physically, and spiritually, to the man I knew.”
Todd Balf doesn’t think of himself as a survivor. He is, by his own description, a “quote-unquote regular guy” who has been through an extraordinary set of circumstances. You can read Todd’s story in his new book, Complications published in July as part of a new Scribd Original series of audio and ebooks.
A talented writer, avid cyclist, and devoted dad, Todd’s identity had always been firmly rooted in the things he does well, not the things he can’t do. Then, in 2014, following months of persistent back pain, his doctors discovered a softball-sized tumor in his spine, and everything changed. First came the diagnosis of chordoma, then two long and risky surgeries with a team of specialists, then a traumatic partial paralysis, and finally, after a long and difficult recovery, an unexpected stroke.
For an athlete with naturally competitive instincts and a sports journalist with a talent for telling stories of endurance and determination, Todd’s mindset had always been one of pushing through hurdles to get to the finish line. He looked at his diagnosis of chordoma as training for a race and thought of surgery as race day. But when faced with serious complications during surgery that led to a spinal cord injury — a rare outcome in an already uniquely rare disease – his expectations for a smooth recovery were dashed, and Todd felt lost.
“I see myself as someone who is adventurous and optimistic, but I really struggled.”
Despite having received an accurate initial diagnosis, being treated by a team of skilled chordoma experts at Massachusetts General Hospital, and connecting with the Chordoma Foundation early in his chordoma journey, Todd still faced a difficult uphill climb. He felt his complications set him apart and it was those complications, and traumatic physical injury, to which he most identified – not the cancer itself. For a long time, he did not think of himself as part of the chordoma community and was hesitant to connect with other affected individuals and families. “I’m the guy who’s got this,” he thought,“ and these doctors are the guys who will fix me. I only need to be in my story.”
But during his radiation treatments at Massachusetts General Hospital, his radiation oncologist, Dr. Tom Delaney, offered to connect Todd with another spinal surgery patient who was also a cyclist and fellow New Englander to whom he thought Todd would relate. This small connection blossomed into a deeply meaningful relationship Todd maintains to this day, and to which he credits the pragmatic, realistic, and hopeful outlook he eventually took on while facing what had previously seemed like insurmountable challenges.
“You can’t just turn to doctors all the time, and it doesn’t always feel natural to reach out to other patients you don’t know and who may not approach things the way you do. But looking back, I sometimes wish I’d been more engaged in the community. When I found that one other person who knew what I was going through, and who understood me, it was just what I needed. It was enough.”
Together with his wife and children, Todd threw himself into his physical recovery. In 2018, after intensive rehab and hundreds of workouts, he rode a tandem bike with his friend Chris McKeown in the two-day, 160-mile Pan Mass challenge, for which they both received the Chordoma Foundation’s 2018 Uncommon Champion award. It was a triumph of both will and skill – the same kind of story Todd was often drawn to as a writer.
But less than a year later, the rods that had been inserted into Todd’s back during his initial surgery shattered, creating another waterfall of complications. Not only did this require more surgery – during which his rods were successfully replaced – he then experienced a stroke which robbed him of his speech. At this point, his neurologist warned Todd’s wife and children that he may never return to his writing career. But he – and they – knew better. Once again, Todd summoned his stamina and resolve, applying his training as a cyclist, and climbed right back up the hill.
He started writing “Complications” on his iPhone, and found that after years of emotionally – and then, literally – losing his voice, he finally knew exactly what he wanted to say and how he wanted to say it.
“It took me more than four years to embrace the idea that cancer is a part of my life. We all approach our experiences differently, but there are some universals, including the fact that we’re all on a path to get back to who we are – not necessarily who we were, but who we can be.”
Recently, Todd was part of a patient and caregiver panel that provided guidance to the Foundation as we designed and launched the Chordoma Survivorship Initiative, aimed at helping individuals affected by chordoma manage the physical, emotional, spiritual, and practical challenges commonly experienced following diagnosis and treatment.
He still sees himself as a normal guy (well maybe a normal, abnormal guy) and we can’t wait to see what hills he climbs next.
About the Chordoma Survivorship Initiative
Dealing with quality of life issues that have serious impacts on the well-being of patients and their family members is a common experience in our chordoma community. The goal of the Chordoma Survivorship Initiative is to provide you with information, support, and resources to help you get the care and assistance you need to live well during and after treatment. Existing resources include those listed below, with more to come in near future.
As the initiative expands, your input will be critical to ensuring it meets your needs and the needs of our community as a whole. In order to learn more from you, we’ve developed a survey tailored to our community, focusing on chordoma survivorship and quality of life. The survey is now closed. View the preliminary results.