A few years ago, Shari Grueninger led a busy life as a wife, mom, attorney, and teacher. But following a chordoma diagnosis in 2019, a partial sacrectomy, and 43 rounds of radiation, her days now move at a much slower rhythm. “Chronic pain and exhaustion as a result of chordoma and its treatments have made life challenging. Slowing down and limiting activities was not part of my plan,” Shari says. Adjusting to this change of pace has led her to explore resources and ask for help during this new and sometimes difficult season of life.
Thanks to research advances and improvements in care and treatment options for chordoma, more people like Shari are living with and through this disease and its post-treatment side effects. As Shari’s experience illustrates, chordoma patients’ difficulties don’t end when treatment ends: continued pain, fatigue, emotional struggles, and more are common. Recognizing these challenges, we now offer a growing array of survivorship resources to help people live better at all stages of their journey with chordoma.
In Shari’s case, chronic pain has been the primary obstacle post-treatment. She’s not alone: our Chordoma Survivorship Survey found that up to 60 percent of chordoma patients and survivors report ongoing pain. And while a variety of strategies can be helpful for many people who struggle with this issue, Shari has yet to find lasting control for her pain. Her frustrations have been compounded by a healthcare system that doesn’t always take chronic pain seriously. “The medical system often lacks experience in managing chronic pain. I’ve had doctors make insensitive comments such as, ‘you are complicated,’ and ‘pain is subjective, I only deal with objective issues.’ But pain is clearly more than a subjective feeling. Pain is a very real problem and demands our attention,” she says.
Fortunately, Shari has experienced much greater compassion and understanding within the chordoma patient community. Last year, she began participating in our Virtual Support Groups — monthly opportunities for chordoma patients, survivors, and caregivers to learn from one another, make new connections, and exchange information. “We’re not meant to do life alone. The chordoma support group is especially important because this cancer is so rare. Each time I participate, I walk away encouraged. It’s amazing to connect with people around the world who share similar struggles and experiences in their chordoma journey,” Shari says.
Participating has helped ease her feelings of isolation: “I’ve learned that I am not alone, and that I am not the only ‘complex’ human being, struggling in these difficult times. I see firsthand that others experience pain, loss, and frustration with well-meaning medical personnel who do not seem to have time or energy to process this unique diagnosis,” she adds. Group members have shared coping strategies, problem-solving techniques, ways to advocate for themselves, and new ideas for managing pain and other struggles. “The support group spurs me on in times of exhaustion,” she remarks. “It’s a safe place to share my feelings!”
In addition, Shari has relied on our free Patient Navigation Service for personalized support along the way. “I love that I can call Shannon [Lozinsky] at the Chordoma Foundation. She listens well. She asks insightful questions that reflect curiosity and a desire to truly understand. She also offers facts sheets and resources that reflect that she has clearly heard and understands my concerns,” Shari says. She adds, “Foundation staff and patients in the support group have become an important part of my journey, and I think of them as extended family. I have learned much from them.”
Shari also credits her loving husband, family, and faith for playing a supportive role in her survivorship journey. “They make my life seem hopeful rather than hopeless,” she says. “My faith and family help give me perspective. I now see insensitive statements about my pain in a more positive light: I am complex (rather than complicated) — uniquely designed for a specific purpose. And God has surrounded me with a caring family: not just relatives but also church and the Chordoma Foundation support group and staff.”
With these communities in her corner, Shari is not only persevering through continued challenges, she’s discovering new things to appreciate about this chapter of life. “In the midst of the pain, I’m learning the value of slowing down and appreciating rest,” she says. “I’ve learned that it’s not just ‘okay,’ but imperative to attend to my pain, and to rest, exercise, and eat right. I’ve learned that it is necessary to retreat sometimes, and these times of retreat can be used for good — they allow me to decompress, receive from others, and help me prepare for a new season of life.”
“This new season looks different and the journey changes the way I do things: physically, emotionally, and spiritually,” Shari adds. “I have limitations, but also have new opportunities to be still and observe things I was once too busy to notice. This experience has slowed me down and reminded me to listen to others and to have more compassion for those who suffer with any kind of pain. And I’m intentional about sharing with others the things I have learned during this journey.”
All of our resources for chordoma patients and survivors are made possible through generous gifts from individuals affected by this disease. In fact, one of our most dedicated survivorship supporters is Shari’s brother, John Lewis. “While I don’t fully understand what a survivor goes through, I do understand that after treatment, quality-of-life challenges can take a physical and mental toll that are difficult to bear,” says John. “I wanted to give back to the organization that helps my sister, so you could continue and expand your mission with her and with others facing the same diagnosis,” he says.
To share what you’ve learned along your own path with chordoma, we encourage you to submit your own Uncommon Story. Insights from the ups and downs of your experience can help others in our community feel more connected and better 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.