Traveling with a Brain Tumor: Beach Trip vs a River Cruise on the Rhine

Last week we drove to Wrightsville Beach, a consolation beach trip instead of going on a European River Cruise. Ernie wasn’t comfortable traveling overseas with a brain tumor. A two hour drive to the beach seemed more doable than a plane ride over the Atlantic.

Ernie’s tumor, subependymoma, is benign, small, rare. The tumor is usually discovered accidentally during a CT or MRI scan. At least that’s what I found out on a subependymoma Facebook group. I was the 104^th member to sign on to this international connection. The members reported symptoms ranging in severity but rarely was surgery needed.

In September just a day before his 84^th birthday, Ernie stood in the living room looking at his I Phone. We were going shopping and I waited for him to come with me to the car. Instead, he just stood by the front door, staring at the phone in his hand.

“What’s holding you up?”  He told me something about having to deal with an issue on his computer. “You’re not making any sense,” I told him.

The doctor at the Emergency Department said Ernie had a “transient alteration of awareness.” The CT scan showed what looked like a hemangioma, a collection of blood cells at the base of his brain. “You probably have had this for years,” the doctor told him. Later, a neurologist ordered an MRI. The growth at the base of his skull was most likely a subependymoma. Nothing to do but wait and watch.

Two months later, Ernie raced ahead while we were walking, listing to the left at a rapid pace as I looked on aghast. He fell at our front door. He couldn’t tell me why he took off. He was taking a blood thinner, so off the ED again.  All tests were normal. The neurologist couldn’t say with confidence that the ataxia (loss of control of body movements), or fall was due to the brain tumor. “Go on your river cruise,” he said.

We had fully paid for the trip. As the departure date grew closer, Ernie began to have doubts about being overseas if there was a chance he would experience any symptoms from the tumor, whatever they might be. Getting health care in a foreign country didn’t appeal to him. It became clear that he agreed to this trip to please me. I still feel the need to travel. How difficult for him to sputter out his concerns. I couldn’t argue or dismiss his feelings, as disappointed as I felt.

It’s one thing to be given clearance and another to be given assurance that these unheralded events of a brain tumor wouldn’t surprise us as we floated down the Rhine.

We chose not to do the river cruise, forfeiting most of our money. Rather than be in Amsterdam for my 82^nd birthday, I had a celebratory dinner at a local seafood restaurant. Our children, their partners, and our grandchildren shared the warm togetherness of family. A sweet memory I will always cherish.

The weather was perfect this past week for our trip to Wrightsville Beach: sunny with low humidity. The sound of the ocean surf reverberating up to our third floor balcony capped the relaxation agenda. Our morning walks along the beach as the tide headed out challenged our leg muscles in a good way.

Ernie and I needed to make difficult decisions. I’m sure as we continue aging, should we be so lucky, we will continue to be faced with twists in the road. The best thing here is that we did have choices. And now we have pleasant memories.