Chordoma Foundation

Experiencing survivorship from the co-survivor’s perspective

Chordoma doesn’t just affect the individuals diagnosed; it also affects their loved ones. If you offer the crucial emotional, physical, financial, or spiritual support that someone with chordoma needs, you are a co-survivor. Whether or not you think of yourself that way is a matter of personal preference. At the Foundation, we consider the caregivers, spouses, partners, family members, and friends of those who have chordoma to be part of the survivorship experience, and we’re here to support you along every step of your journey, too.

Throughout the chordoma community, co-survivors turn to the Foundation — and each other — for information, support, and guidance. From our Peer Connect program to our Community Conferences to Chordoma Connections and beyond, there are countless ways for co-survivors to find each other and get the personalized support they need as they care for someone with chordoma.

Helping others feel less alone: Kris Stahl’s story

We were cushioned all around with kind, caring people who showed up for us time and again, but from Marty’s diagnosis in 2008 until he passed away in 2013, we never met or even spoke with a single other person who had chordoma. It definitely felt like we were going it alone. That’s why I feel so strongly about doing what I can for others now. So no one else has to experience those feelings of isolation.

Kris Stahl

chordoma co-survivor

Kris Stahl and her husband Marty were in their 60s when Marty was diagnosed with chordoma. It took nine months to get the diagnosis, and several trips around their home state of Wisconsin to find a doctor who knew what it was and how to treat it. Kris recalls vividly the frustration of seeking answers from people who didn’t have them, and the figurative punch to the gut when they learned it was chordoma.

 

“It was like being on another planet. We felt completely helpless. How were we supposed to navigate something we’d never even heard of? We felt as if we were at the mercy of all these medical professionals we’d never met before.”

When they finally received an accurate diagnosis, it felt like a breakthrough. Kris was so filled with gratitude that she baked dozens of homemade brownies for the hospital staff who supported Marty — from the doctors and nurses who treated him to the lab pathologist who reviewed his tumor sample.  

Becoming a caregiver came with lots of changes, some big and some small. One of the first adjustments the Stahls had to make was to their dynamic as a couple. Up to that point, they’d had a very equitable marriage. Both worked, both raised the kids, both were independent spirits, and neither was dominant in the relationship. But after Marty was diagnosed, Kris realized she had to step up. There were times where fatigue or pain would require Marty to step back, and Kris knew she’d need to be extra present in those moments – learning, listening, and advocating on his behalf.

Kris and Marty Stahl

“One of the things that helped me was having experience in social work. I was able to apply that skill set to our family, both practically and emotionally. Anytime we went to a doctor, I took the same 3-ring binder with us so I could keep track of all of Marty’s health updates in one place.”

The Chordoma Foundation had only just launched when Marty was diagnosed, and they didn’t find much at the time that connected with their experience personally. Knee-deep in health and family responsibilities, Kris and Marty couldn’t take on anything else and opted not to engage much with the chordoma community beyond reading an occasional newsletter.

But when Marty passed away in 2013 after a hard-fought battle, Kris decided to take another look at the Foundation. It had been five years of living with an extremely rare disease that no one else she knew could relate to, no matter how supportive or gracious they were, and she was ready for more.

Even though Marty was gone, I was still living with it. It didn’t define me, but it was a part of me, a part of us. I knew I wanted to do something, but I wasn’t sure what. So I looked again at the Chordoma Foundation and discovered a world I didn’t know existed.”

The first time Kris met anyone who had personally dealt with chordoma was in 2016. It was a woman from a few towns away whom she’d contacted through the Chordoma Survivors and Support Facebook group. Within minutes of sitting down for coffee, the strangers became friends, and Kris felt a huge sense of release. She realized how therapeutic it was to speak with someone who understood her experience and decided she owed it to Marty and what he’d endured to look for ways to help others.

So that’s what she did. Kris summoned her courage and traveled alone to Boston, a strange city halfway across the country, for the 2016 International Chordoma Community Conference. When she got there she was amazed by what she saw — roomfuls of patients, caregivers, doctors, and researchers all focused on this disease she and Marty had navigated on their own. It was breathtaking.

Coming out of that meeting, Kris decided to get involved in supporting other chordoma families. She became a Peer Guide in our Peer Connect program and, later, a moderator of Chordoma Connections, our private, online community. Kris also worked with our Research team to donate Marty’s tumor tissue so scientists could learn from his experience and inform the creation of better treatments for others. She has been and continues to be an invaluable member of our community, helping countless families navigate the waters she has forged.

Kris Stahl and Shannon Lozinsky at Chordoma Community Conference

Kris Stahl and Shannon Lozinsky (our Director of Patient Services) at a Chordoma Community Conference

“This was what I could do. This was what I could relate to. This was what I would have loved to have had all those years ago. I can’t donate much money and I don’t have a medical degree, but connecting with and helping other people who share this extremely unique experience makes me feel like I’m keeping a promise to Marty. I do it in honor of him and what he endured.”

Learning to adapt and accept: Rob Strauss’ story

We didn’t fully grasp how rare chordoma was and how vital the next steps in treatment were until we started talking with other affected individuals. It also helped us understand how common — and absolutely normal — our feelings of stress, fear, worry, and isolation were.

Rob Strauss

chordoma co-survivor

Rob Strauss has been a co-survivor for more than 17 years, since his now wife Sharon had her first surgery. After more than a year of minor symptoms that were continually mistaken for (and treated as) other things, Sharon was properly diagnosed through a second opinion by a surgeon experienced in chordoma. At the time it was still such a poorly-understood condition that her providers debated whether chordoma was even cancer. Sharon’s prognosis was promising so both she and Rob assumed she would have one surgery and be done.

But after Sharon experienced two recurrences the next year, Sharon and Rob realized they needed to learn more. That’s when they started digging online into research and came across a Microsoft message board started by other chordoma patients seeking connections and answers. With the encouragement of these other patients, they sought out additional medical opinions.

“It wasn’t until a year and a half after Sharon’s first surgery, after we met Dr. Liebsch in Boston, that we finally got the full, stark picture of chordoma. That’s when it hit me in the pit of my stomach — all our plans needed to change, and fast. It was like standing in quicksand.”

Already engaged, Rob and Sharon had to postpone their wedding around Sharon’s uncertain treatment plans. She began seeing a new surgical team, including Dr. Chandra Sen (now at NYU and who later served as chair of the Foundation’s Medical Advisory Board), and worked with them to determine a new course of treatment. Next came more invasive surgeries along with longer hospital stays. The recoveries were a challenging period for both Sharon and Rob as they learned to adjust to their “new normal.” They were able to finally reschedule their wedding and were married in September 2008.

At the time, Rob felt that his role was to “be strong” for Sharon. Despite being open-minded and evolved in his views of masculinity and relationships, Rob still believed he had to be “the protector” and couldn’t fully admit to himself or his family and friends how concerned or powerless he often felt.

“It wasn’t until the first Chordoma Community Conference in 2008 that I was able to say out loud that I needed help in caring for Sharon. It took connecting with other co-survivors, and listening to their own stories, to realize that it’s ok, and actually tremendously important, to ask for and accept support. And that I wasn’t the only person in this situation.”

Sharon Berlan and Rob Strauss

Sharon Berlan and Rob Strauss on their wedding day

Sharon and Rob became deeply involved in the chordoma community, attending Foundation conferences, managing the Chordoma Survivors Facebook group, and serving as a resource for other patients and families. From helping to run breakout sessions for caregivers at Chordoma Community Conferences to talking one-on-one with fellow co-survivors, Rob found himself in a guiding role, able to share the lessons of his own experience with others going through it for the first time.  

During the 2011 Chordoma Community Conference, Rob recalls participating in a caregiver session hosted by clinical social worker Amy Sales of Johns Hopkins Hospital. She’d recently published a book entitled “Walking on Eggshells: Caring for a Critically Ill Loved One,” that he instantly identified with. That’s exactly what he’d been doing, he realized. Rob came to learn that asking for help didn’t lessen the bond that he and Sharon had or make him any less capable of being there for her.

“If there’s anything I could do over, from the beginning, it would be to admit to myself that I’m not superman and I don’t have to be! I would be more open about sharing with others that while I’m pretty sure I can handle being a co-survivor, I may still need help or time for myself.”

Since our establishment in 2007, Rob and Sharon have been part of the heartbeat of the Foundation. They’ve generously offered their time, insights, and support to hundreds of patients, families, and medical professionals across the community and are constantly providing valuable ideas and contributions to our team.

Sharon Berlan and Rob Strauss, chordoma patient and chordoma co-surivivor

Sharon Berlan and Rob Strauss

“There’s no ’one right way’ to navigate this disease. There doesn’t have to be. And that’s one of the things we value most about the Chordoma Foundation. It respects each individual’s experience as important and vital and is there to support us. The CF has achieved so much in such a relatively short time. We’re so grateful for the progress that has made been towards improving the lives of survivors and their co-survivors.”

5 tips for co-survivors from Kris and Rob

Take advantage of the Foundation’s resources

From Patient Navigators and Peer Guides to Webinars and Chordoma Connections, there are ways for everyone to get what they need.

Insist on being seen by a chordoma expert

Go with your loved ones to where the expertise is. Absolutely insist on seeing providers and specialists who have experience with chordoma, no matter how far you have to travel for treatment. Don’t be intimidated by distance. More doctors are offering initial video or telephone consultations — feel free to ask for that option. The Foundation’s Navigators can help.

Be your own best advocate (exclamation point!)

Learn what you can, come equipped with questions, and seek second opinions. You don’t have to accept everything you hear at face value, and you shouldn’t be afraid to push back if you don’t understand or agree with the recommendations you’re getting.

Ask for and accept help

Your friends and family want to help and often feel frustrated if there’s nothing they can do. You’re doing them a favor by giving them a task — or sharing responsibilities — and it in no way minimizes the importance of the role you play.  

Practice self-kindness

When you’re a caregiver, it can feel like your world is getting smaller while others are getting bigger. It’s ok to need relief and, if you get it, to enjoy that relief. You may not be the patient, but you’re going through the experience with them, and there will be moments when you need space or time for yourself. Take it!

Connect and get help



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