Tess Michaelsen: Her journey with Chordoma

Story of Tess Michaelsen:

"It takes a little while to get used to something so big like cancer. I don’t think you’re ever really used to it. But you just learn to live with it."

We all know cancer. We know how devastating and unpredictable it can be—some fight and survive, while others are not as fortunate. But what if I told you about a cancer so rare that most people have never even heard of it? A cancer with no major medical breakthroughs, no widely recognized treatments, and only a handful of cases worldwide?

This is the story of Tess Michaelsen—a young woman living with metastatic exterior axial chordoma, a rare and brutal form of cancer.

How I Found Her

It started the way most things do these days—on social media.

One night, I found myself deep in the world of medical TikTok, scrolling through videos of people sharing their experiences with rare conditions. Some were raising awareness, others were finding comfort in connection. And then I came across Tess.

She had a presence that made you stop. Not just because of her story, but because of the way she told it—with honesty, rawness, and an almost effortless strength that didn’t beg for sympathy but demanded understanding.

Curious, I clicked on her profile and watched her “Get to Know Me” video. That’s when I learned that Tess was living with a cancer so rare that most doctors would never even encounter a case like hers.

I had to know more.

I quickly followed her Instagram, debating whether to reach out. Would she even see my message? Would she be willing to share her story with a stranger? I chickened out. 

But something told me to try a week later.

To my surprise, she responded. And from that moment, I was given a glimpse into a journey that instead of being heartbreaking was deeply inspiring.

Diagnosis in College

Tess was in the middle of her junior year of college, preparing for her senior year, when everything changed.

“As a child, I had leukemia—A.L.L.,” she told me. “But I was a pretty fun kid growing up. I loved playing sports. I loved arts and crafts. I loved being with my family. That part of my life stayed pretty consistent up until now.”

Then came the diagnosis.

“I was pretty devastated and in shock. It took me a little while to, you know, be okay with everything. I was really angry. And I was lashing out at people around me just because I didn't want to believe the news. I didn't want people to feel sorry for me. Obviously, now I know that's not the case. I know people are reaching out to support me.”

She paused before adding, “It takes a little while to get used to something so big like cancer. I don’t think you’re ever really used to it. But you just learn to live with it.”

This had made me wonder if this was the living truth of many facing rare illnesses like cancer. 

The Hardest Part

When I asked Tess about the most challenging aspect of her condition, she didn’t hesitate.

“One of the hardest parts of living with this condition has been learning how to be mobile again,” she admitted.

The tumors had taken their toll.

“I lost use of my left arm completely, and I have limited mobility in my right leg. Just from tumors. It’s been pretty hard. It’s been really hard learning how to fold laundry, take out the trash, or clean my apartment.” She let out a nervous laugh.

 “Just simple things that should be easy with two hands, but it’s hard with one. So, I’m just learning how to do things again. In terms of using my body in the way it should. That’s been one of the biggest challenges.”

But the physical limitations weren’t the only struggle.

“My diagnosis impacted my daily life in a negative way but also in a positive way,” she said thoughtfully. “Obviously, the negative is pretty apparent. It affects me in terms of being more handicapped and, you know, being angry and sad at times.”

For a moment, there was a heaviness in her tone—a weight that spoke to the challenges she carried every day. But then, something shifted. Her voice grew lighter, steadier, filled with something close to warmth.

“But the positive side is that I found so much support through friends and family—even through my workplace. I’ve never seen such great support before. And I’m very lucky to have it.”

She went on to share a deeply personal part of her life: “I live with my partner. He’s wonderful. He’s so supportive. Helpful and, you know, I’ve never received love in the way I’ve now.” Her words carried an overwhelming sense of gratitude and affection.

Still, some dreams had to be put on hold.

“It impacted my future plans. I would’ve loved to become a nurse one day,” she said, her voice trailing off for a moment as though she were imagining the life she once envisioned. “But that’s obviously a bit hard when you’re handicapped. There are ways to do it, but… I’m putting my future plans for school on pause as well.”

The weight of her words was heavy, as if she had not just accepted reality but was still grappling with the loss of a dream she had worked so hard to build. There was a quiet resignation in her voice, but also a sense of determination—she wasn’t closing the door completely; she was just waiting for the right time. Tess had always been driven by purpose, by helping others, and while nursing might not be in her immediate future, her dedication to serving others never wavered. Her journey had only shifted course.

Her Work as a Child Life Specialist

Tess works as a child life specialist at Tusk Medical Center in Boston. Her job is to help children who are going through medical treatments—kids who are scared, confused, and often in pain. She makes their hospital stays a little less frightening, providing emotional and psychological support through play therapy, education, and comfort.

Her own experiences have deeply shaped the way she approaches her work.

“My experience has influenced my work in a very positive way, actually,” she said. “I know what it’s like to go through difficult times. I know what it feels like to be scared. And I know how much it means to have someone there who understands—even if they don’t say it out loud.”

Despite her struggles, she keeps her personal battles private.

“I don’t tell my patients what’s going on with my life. Unless they ask. I don’t make it apparent at all. I usually wear a wig so they don’t notice, and I look healthy, so that’s really how it’s influenced my work. But even if they don’t know my story, I use what I’ve been through to support them through their hard times.”

Her job has given her a sense of purpose. A way to channel her pain into something meaningful, which to me personally was very brave.

Raising Awareness and Finding Connection

Tess uses social media for more than just sharing her story—it’s become a way to connect with others.

“I use social media to spread awareness and connect with others in a way that is like a digital journal for myself,” she said. “That’s what I wanted it to be when I started my journey. I was hoping to find someone else like me, facing this.”

Then she paused, her voice quieter.

“So far, I haven’t. I’m hoping that one day I will find someone. But right now, I’m using it as a way to connect with others. And to spread awareness about what’s going on with my life and others going through cancer treatments.”

She was right—finding others with chordoma is incredibly difficult, especially since not many openly share their stories on social media. That realization hit me with a mix of sadness and admiration. It was heartbreaking to think how isolated she must feel, yet there was something inspiring about her willingness to raise awareness. By doing so, Tess was creating a space where others could come forward and perhaps find comfort in knowing they weren’t alone. 

“I just wanted people to get an inside scoop—living day to day with cancer. And I have been able to connect with other patients, which has been amazing. I’ve never had these connections before, so I’m really happy to have them now.”

Final Thoughts

Tess with her family as a young kid.

When I asked Tess what advice she would give to someone newly diagnosed with a life-changing illness, she didn’t hesitate.

“I would say that although it’s hard, learn from those around you for support. And don’t be afraid to share your journey because you never know what comes out of it. But also, take the time you need. There’s no rushing it.”

She added, “To get better, you need to focus on yourself first. Put yourself first. Which could be a little selfish. But also remember–we are loved and supported.”

What is Chordoma?

Chordoma is a rare type of bone cancer that develops from remnants of the notochord, a structure present in early fetal development that guides the formation of the spinal column. While the notochord typically disappears as the spine forms, in rare cases, some cells remain and, over time, can mutate into a slow-growing but locally aggressive tumor.

Chordomas most commonly occur in the skull base, spine, or sacrum (the lower part of the spine). These tumors tend to grow slowly, but because they are located near critical structures like the spinal cord, brainstem, and nerves, they can cause significant neurological complications and are difficult to remove surgically.

Symptoms of Chordoma

Symptoms depend on the tumor's location but often include:

• Skull base chordomas: Headaches, vision problems, difficulty swallowing, or facial numbness.

• Spinal chordomas: Back pain, numbness, weakness in limbs, or loss of bladder/bowel control.

• Sacral chordomas: Lower back pain, difficulty walking, or nerve pain radiating to the legs.

Treatment Challenges

Chordomas are resistant to chemotherapy and partially responsive to radiation therapy, making surgical removal the primary treatment. However, due to their proximity to vital structures, complete removal is often challenging, and recurrence rates are high. In metastatic cases (where the cancer spreads to other parts of the body), treatment options become even more limited.

Survival and Prognosis

Chordoma has a five-year survival rate of around 50-80% depending on factors like tumor location, stage at diagnosis, and the success of surgical removal. Once metastasized, survival rates drop significantly, as there are few effective systemic treatments available.

Despite ongoing research, chordoma remains an underfunded and understudied disease, with fewer than one case per million people diagnosed each year. This lack of awareness and treatment options makes the journey for patients like Tess particularly isolating and uncertain.

Her Journey

Tess’s journey is not just about illness—it’s about resilience. It’s about love, strength, and finding meaning in the face of uncertainty.

Her story is still being written, and through her advocacy, she’s ensuring that others facing similar battles don’t feel so alone.

And maybe, just maybe, one day, she’ll find that person she’s been searching for—someone like her.

Sources: 

• The Chordoma Foundation (www.chordomafoundation.org)

• The National Cancer Institute (www.cancer.gov)