Instinct

Last night I was re-reading the very first post on this blog. I do that every few months to remind myself of how far Steve has come and the many countless blessings we've encountered since December 2007.

What I didn't share then is the role that instinct has played in this journey.

In the weeks before Steve's first MRI, which revealed a lesion in the brain stem, he was noticing some odd symptoms. Difficulty swallowing thin liquids, frequent hiccups, recurrent headache, slurred speech.

It sounds strange now, but at the time we didn't lump them all together as one big problem. The symptoms didn't hit all at once. One day he'd have trouble eating soup. Two days later I'd have trouble understanding a phone conversation.

By Thanksgiving that year, about four weeks after we started noting symptoms, we agreed that something was wrong and that he needed to see his primary care physician.

When we returned from Austin, he made an appointment for the following week.

Dr. Y didn't seem all that concerned. He wanted to order a modified swallow study and possibly an MRI.

I wasn't convinced that we should take things so slowly. Something just didn't feel right. So I called our friend Jen, a speech therapist, to describe the symptoms.

Cooper and Katie were eating dinner in the kitchen. I didn't want to worry them with the list of Steve's troubles, so I stepped into the dining room. After I described everything to Jen, she gently explained that the worst case could be a mass in his brain.

I had to sit down right away. The very thought took my breath away. And yet it also made sense.

When Steve came home, I shared the Jen conversation and emphasized the importance of getting an MRI right away.

We had to pester and practically beg Dr. Y's office to schedule the MRI.

On Dec. 11, 2007, we drove to an Irving hospital for the modified swallow study. The test revealed no problems. I kept asking, "Are you sure? You don't see anything?"

That afternoon we were back in Frisco for the MRI. I was in the imaging room with Steve, listening to the magnets and reading a book. Steve was in the machine the whole time. He couldn't see the technician through the glass window, but I could.

I could see when he stepped away, and as each minute passed and he didn't return, I knew without a doubt that something was wrong.

The tech returned, spent more time directing the giant machine to scan Steve's brain, and then moved us to a hallway in the radiology department.

And, man, was he chatty. He talked about rock concerts from the 1970s, mostly. He and Steve shared an affinity for ZZ Top. I tried to listen and be polite, but my stomach was in knots. I knew he was stalling.

When he finally introduced us to the radiologist, I saw for the first time a look of sympathy and pity that we would see again and again in the next few weeks.

The radiologist briefly explained that the big bright blob in the middle of the film on his light board was a lesion. He had called Dr. Y with the results. Dr. Y was on the other line of the phone to talk to Steve.

We were stunned and shocked. Steve sobbed. I blinked a lot and listened as closely as I could to the radiologist, and then we left, with instructions to see Dr. Y the next morning.

The next morning it was pouring. If you live in the Dallas area, you know that rain and commutes don't mix well. We were late to the Dr. Y appointment in Irving, and the receptionist haughtily told us that we may not be able to see Dr. Y that day.

That woman had no idea what we were dealing with, but I wasn't going to let that excuse her behavior. I'm sure I raised my voice a little as I told her that we would be seen right away.

The meeting with Dr. Y didn't go well. He told us he was sending us to the neurologist he sends all his patients to.

I asked if the neurologist had a specialty. Did he specialize in MS, seizures, Parkinson's?

Dr. Y, who refused to make eye contact with me during the entire appointment, said with the same tone his receptionist had used, "Neurology is the specialty. You don't get more specialized than that."

We left to see his Dr. S. And we decided we'd never see Dr. Y again. (To this day, Dr. Y's office has never called to follow up. Steve had been his patient for a decade.)

Dr. S must have never seen a film like Steve's before, which is fine, but he should have just said so right away. Instead he stumbled and guessed. He looked at the scan and said, "You know, I think they can just go in and cut that out."

Now, I had done some cursory research and made some quick phone calls to friends with medical expertise, and I knew that you don't just cut into the brain stem. And I'm a journalist with a bachelor's degree, not a physician with a specialty in neurology.

We left Dr. S and decided we wouldn't return.

We were fortunate to have access to other options. The son of one of Steve's co-workers is a neuro-surgeon in Dallas. Leti made phone calls and got us an appointment with her son that very afternoon.

Plus, Steve works with doctors at Children's who are on faculty at UT-Southwestern. One of them made a phone call to a renowned neurosurgeon at UT-SW, and we got an appointment for the next day. We also have a friend who is a physician who called UT-SW on our behalf. (Soon I need to write about all the people placed in our path -- part of a plan that we're convinced can't be called coincidence.)

Every step along the way since then, Steve and I have relied on a great many factors to influence decisions. We research options, talk to as many people as possible before becoming overwhelmed, pray, think, study. And we listen to our intuition.

Before this experience, I thought of health care as a sort of flow chart. You have a fever and bulging eardrums? That's an ear infection, and you need an antibiotic. You have a deep cut on the palm of your hand? You need stitches.

With an illness as big as cancer, health care is truly an art and a science. There is no one answer to every problem. There isn't one expert who solves everything with a prescription.

There are multiple choices and paths, and the patient and caregiver often have as much say as the medical providers. That's liberating and frightening at the same time.