Timeline of My Journey
Started experiencing persistent headaches when waking up every morning. Also lost my peripheral vision when I stop at stop sign, I couldn't see the traffic coming from my left, and would have to turn my whole head.
MRI revealed a mass. Happy Valentines Day. I remember even after the nurse told me I had a tumor that I still didn't correlate that I had cancer. Funny how the mind works. I was in shock, but also trying to stay positive. The word "tumor" was scary, but I held onto hope that it could be benign. I had no idea what a chordoma was at this point.
Waiting for pathology results to determine what kind of tumor I really had after first surgery Dr Kerr didn't find what he expected it to be. The confirmation brought both fear and relief - knowing what we were facing. The word "tumor" changed everything. Followed by the words "rare" and "chordoma" - a condition I'd never heard of.
Even though this was the 7th surgery it was the longest day of my life. Trusting my surgeons with something so precious. Waking up and counting my blessings - and my neurological functions.
Every day is a gift. Follow-ups bring anxiety, but also gratitude. Learning to live with uncertainty while remaining hopeful.
Journal Entries
The Day Before Surgery
April 13, 2026I can't sleep. Tomorrow changes everything. I've met with the surgeons, asked all my questions, but nothing prepares you for this feeling. We wokw up early to cacth the Cross island Sound Ferry, The house is quiet. I've written my will - just in case. But I'm trying to stay positive. The skill of my surgical team gives me confidence.
What I'm grateful for:
- My Dearest Martine and her unwavering support
- My amazing family and their support
- Skilled and compassionate medical team
- The friends who've reached out
- Modern medicine that makes this possible
What I'm scared of: The unknown. Complications. Change. But fear is part of this journey, and I'm learning to walk with it.
Two Weeks Post-Op: Small Victories
April 22, 2026Today Dr Gray removed my packing, I did see it for the first time and it looked like two small socks was stuffed in my nose. Recovery is slow. The headaches come and go. But each day brings small victories:
- Went for a walk with Martine, tim, and Michaela to Cordwood Landing County Park
- Seems like the Diabetes Insipidus is harder to manage than expected
The waiting is hard. Waiting for pathology, waiting for healing, waiting for the next scan. But I'm learning patience in a way I never had to before.
1-Month Scan: Scanxiety is Real
TBD 2026Scan day. The anxiety is palpable. They should call it "scanxiety" officially - because it's a real thing. The machine's noise, the contrast dye, the waiting room...
Results: Expected post-surgical changes. Continue monitoring.
Relief washed over me. But it comes with awareness that this is a lifelong journey. Six months until the next one. The cycle continues, and I'm learning to live within it.
My New Normal
April 2026>Six months out. I've returned to work part-time. Fatigue is my constant companion, but I'm managing. Some things are different now:
- I don't sweat the small stuff anymore
- I'm more patient with myself
- I say "yes" to experiences I'd have put off
- I advocate for my health aggressively
- I've connected with others in the chordoma community
This diagnosis took much, but it also gave perspective. I'm different now. Not worse - just different. And that's okay.
Reflections on the Journey
May 2026Looking back, this journey has been one of the hardest things I've ever faced, but also one of the most transformative. I've learned so much about myself, about resilience, and about the importance of community. If I could go back to that scared person in February 2019, I would tell her:
Challenges I've Faced
Physical Challenges
- Small changes in taste and smell (post-surgical)
Emotional Challenges
- Anxiety before every follow-up scan
- Grief over my "former life" and plans
- Fear of recurrence - living with uncertainty
- Isolation - most people don't know what a chordoma is
- Guilt - for burdening loved ones
Practical Challenges
- Insurance and medical bills thank god for Medicare/United Healthcare coverage
- Coordinating care among multiple specialists
- Finding accurate information about rare disease treatments
- Traveling to specialized treatment centers
What Helped Me
Support System
- My family - unconditionally there
- Online chordoma communities
- Friends who showed up
Mental Health
- Journaling (this website!)
- Acceptance - not giving up, but letting go
Education
- Chordoma Foundation resources
- Second opinions from experts
- Understanding my condition empowered me
- Knowledge reduces fear
Physical Health
- Walking - slowly building stamina
- Gentle yoga and stretching
- Good nutrition - fueling recovery
- adequate sleep - supporting healing
- Listening to my body - rest when needed
- Getting back on the bike trails
Advice for Others
For Those Newly Diagnosed
1. Pause. Don't rush decisions out of panic. Get information, get opinions, then decide.
2. Seek experience. Find surgeons who've done this specific surgery many times. Volume matters with rare conditions.
3. Connect. Reach out to the Chordoma Foundation. Find others who've walked this path.
4. Document. Keep records. Ask for copies of everything. Be your own best advocate.
5. Feel. Whatever you feel is valid - fear, anger, hope, numbness. Process it.
6. Hope. This is hard, but there is hope. Treatment has advanced. People live with this.
For Caregivers
1. Just be there. You don't need to fix things. Presence matters more than words.
2. Ask what they need. Don't assume. Sometimes it's practical help; sometimes it's just listening.
3. Take care of yourself. You can't pour from an empty cup. Caregiver burnout is real.
4. Learn. But don't overwhelm them with all your research unless they want it.