I don’t think people understand how unlikely it is that I’m still here.
Every July I become reflective.
Diagnosis day.
Diagnosis week.
Diagnosis month.
Another year alive.
When people hear “brain cancer survivor,” they assume my story goes something like this:
I had cancer.
I had treatment.
It worked.
Now I go back every few months for a checkup.
I understand why they think that.
That’s just not my story.
In the beginning, there were good options.
High-dose methotrexate.
The hope of getting into remission.
Maybe a stem cell transplant.
Those were real possibilities.
But every time a treatment didn’t work, my path became narrower.
Not wider.
Narrower.
Eventually there were fewer treatments left to try. Fewer doctors who specialized in my disease. Fewer places in the country offering the next option.
That’s how I ended up leaving Oklahoma and going to Boston.
Looking back, I think people assume the hardest part was the treatment.
It wasn’t.
The hardest part was everything the treatment required.
Advanced cancer treatment doesn’t just require a patient.
It requires a caregiver.
Someone who can put their own life on hold.
Someone who can navigate airports, hotel rooms, unfamiliar streets, medications, appointments, paperwork, and all the fear that comes with them.
I still think about that.
If my husband Ray hadn’t been willing—and able—to go with me…
Who could have?
My daughters had young children.
My family had jobs.
Everyone had lives they couldn’t simply walk away from.
Then there was the business.
Ray didn’t just leave home. He kept his roofing company running from hospital rooms and hotel rooms in Boston. Employees and family members home stepped in measured roofs, met customers, deposited checks, and kept everything moving while he stayed with me.
It wasn’t just Ray carrying me.
It was an entire community carrying both of us.
I arrived in Boston believing that because I had been accepted into a clinical trial, my treatment was covered.
Then I learned the truth.
The clinical trial covered the study drug.
Everything else still required insurance.
I didn’t have it.
The VA was paying for my treatment in Oklahoma through Community Care, but I didn’t have approval to receive treatment in Boston. I hadn’t even tried to get it because I believed the clinical trial covered everything.
I remember feeling completely hopeless.
We started looking at every possible option.
Could I qualify for Obamacare if I became a Massachusetts resident?
Insurance through Oklahoma would largely limit my care to Oklahoma.
Massachusetts plans were for Massachusetts residents.
Even if we found a solution, enrollment and approvals could take weeks or months.
I didn’t have weeks or months.
My tumor had already shown us what weeks could do.
Cancer doesn’t wait for paperwork.
While I was trying to survive, the people who loved me went to work.
My sister Judy, a nurse for decades, started making calls and writing letters.
Brittany my daughter, a pharmacist, wrote to the Chief of Staff at the VA.
My other daughter Nicole, an RN, watched my dog and also searched for solutions.
My niece Lauren, also a RN, reached out to people she knew.
Friends helped my daughters create a GoFundMe page so we would have something if insurance never came through.
Everyone was fighting a different battle while I was fighting mine.
Then:
One day Brittany received an email from the Chief of Staff.
It contained one word.
Done.
I wish I could tell you that was the end of the story.
It wasn’t.
It was only the first of many moments when my life could have gone a different direction.
If any one of them had ended differently, you probably wouldn’t be reading these words today.
That’s why I don’t save living for someday.
That’s why an ordinary Tuesday can still feel like a miracle.
If you’ve ever wondered why I travel, dance, laugh so much, or say, “Best day ever,” this is where the answer begins.
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