MRI day

Three years ago today, Steve had the first of many MRIs of his brain, at a hospital just a few minutes from our home.

And while I'm sad thinking about the details of the day, today I'd rather focus on the bigger lesson from that day.

Trust your instincts. And be your own advocate.

When the four of us drove home from Austin at the end of our Thanksgiving visit in November 2007, Steve and I decided that he needed to call his primary care physician about some troubling symptoms.

He was having trouble swallowing thin liquids. He had frequent hiccups. A headache in the back of his head that didn't completely resolve with Tylenol. His speech was slightly slurred.

The next week he saw Dr. Y, who recommended a swallow study and maybe an MRI later.

I called our friend Jen, fellow Frisco soccer mom and a speech therapist. I knew she would know something about the symptoms, mostly because of Steve's speech issues.

I was cooking dinner in the kitchen. Cooper and Katie were working on a project at the table. Steve wasn't yet home from work.

She told me what they might be looking for. The worst case, she said, was a mass in the brain.

I walked into the dining room, sat down in the nearest chair and knew, just knew, that we were dealing with the worst case. This wasn't me being pessimistic -- this was intuition.

When Steve got home and we were able talk, I told him that he had to call Dr. Y and demand an MRI.

He called the next morning and practically had to beg Dr. Y's nurse and then Dr. Y to order the MRI. He told them that we weren't comfortable with a wait-and-see approach.

On Dec. 12, 2007, I sent an e-mail to family members and close friends. It included these words:

An MRI yesterday showed a 15 mm lesion on the right side of his brain stem, mostly in an area called the pons.

I can't count the number of times I wish my intuition had been wrong. But I also thank God that we had Jen to talk to and that Steve persisted and that we started the diagnosis process when we did.

Steve and I learned over and over the importance of being your own best advocate. We learned to speak up when something didn't seem right, when Steve wasn't treated with the best care, when mistakes were being made, when dots weren't connected, when we seemed forgotten in an ER room, when a caregiver seemed too distracted or tired to do the best job.

I know that I can be bossy, but I don't apologize when I'm bossy with friends facing medical decisions. I remind them to ask questions, to seek answers until they're comfortable, to demand the best care -- because no one, no matter how compassionate, at a doctor's office or hospital or cancer center is going to be as qualified an advocate as the patient or spouse or parent or adult child.