Senator McCain: Living Well Until The End

A version of this post also appeared on author Adam Hayden’s personal blog. Adam is a husband, father and philosopher living with glioblastoma, the same rare brain cancer diagnosed in the late Senator John McCain.

On Monday, August 20, 2018, I held closed the gaping back of a hospital gown with a twisted grip behind me.

I shuffled across the hall from a small dressing room into the radiology suite, set the locker key on a table and approached the large, humming MRI machine.

The radiology technician draped a warm blanket over me and glided my still body on a flat bed into the open mouth of the magnet. For 45 minutes, I took deep breaths while images of my brain appeared on a computer screen in the booth outside the room.

For people living with brain cancer, these days punctuate the anxiety of our daily lives.

The results of our scans may show a positive response to treatment, the best outcome; stability since the previous scan, the second-best outcome; or disease progression, the worst possible outcome.

I have been living with glioblastoma, or GBM, for more than two years.

It is a disease many call “the beast.” One peer-reviewed article called it “the terminator.” [1]

Many of us in the brain tumor community confront the reality of this terrible, life-limiting disease. We spend countless hours wondering what we will do when we receive news of a bad scan.

Those conversations surfaced in our home this week as my wife and I waited for the results of my latest MRI.

While we waited for our scheduled appointment with my neuro-oncologist, we received news that a dear friend was facing disease progression with no treatment options remaining.

They wondered: What now?

Later that same week came news that Senator McCain had decided to shift his treatment from fighting the disease to focusing on quality of life.

The McCains wondered: What now?

Then came the news of the senator’s death.

Amid this emotional news, both public and private, my wife and I huddled in a small medical office with my neuro-oncologist.

He told us that my MRI was stable, with no evidence of disease progression.

We each took a deep breath before scheduling my next MRI and office visit for 12 weeks later.

A refrain plays in our minds from my first appointment with this specialist two years earlier, when we received my diagnosis:

“It is extremely unlikely that you will not have recurrence.”

Translated from medical language, my doctor was telling us that, despite aggressive brain surgery, my cancer would almost certainly return.

Glioblastoma infiltrates the smallest spaces in the brain, making it impossible to remove completely through surgery. Resistant to chemotherapy and radiation, it grows like tentacles through the soft folds of brain tissue.

My wife, my family and I expect that one day we will face the difficult question:

What now?

End Well’s mission affirms that all people should experience the end of life in a way that reflects their values and goals.

Dying well and living well are inseparably linked.

The mission continues: “We are a diverse group of people who listen and learn from each other.”

Today, I reflect on the events of this week.

Patients and loved ones across time zones, including our family, close friends and an American icon, shared their experiences publicly so that others could learn from them.

Senator McCain’s death came with quiet dignity and expressions of love from his wife and daughter. His final days reflected an alignment of values and goals.

His life and death offer an opportunity to see End Well’s mission embodied by a public figure.

How might we learn together, in our homes and in the public arena?

In other words, what now?

Join us in searching for the answer.