It was hot that Sunday morning in February 2011 in Old San Juan. I had just retired after 40 years of cardiology practice in the suburbs of Washington, and my wife and I were spending the winter in Puerto Rico.
A couple of friends had arrived by cruise ship, and I took them to see the 450-year-old Spanish fortress that sits above the entrance of the harbor. The fortress walls radiated heat, and after reentering the city we walked to our home for a breather and a refreshing ceiling fan. While sitting in the kitchen and sipping a beer, I suddenly passed out. I woke up a bit dizzy and confused; my friend, an internist from Arlington, told me I had had a grand mal seizure.
My wife, Carmen Alicia, called a local friend, also a cardiologist, who sent us to a nearby hospital; there, an MRI exam revealed a small spot on my brain. The neurologist felt it needed to be biopsied to obtain a tissue diagnosis. I immediately returned to Virginia and went to several specialists, who suggested further testing before I decided to have an invasive brain biopsy. I also had a blood test for cysticercosis, an infection that results from eating undercooked pork contaminated with Tenia solium. This common parasite produces cysts all over the body, including the brain. It is the most common reason for seizures in many countries, particularly in India, where children with seizures are first treated for this disease even before other studies are done. My blood test was strongly positive. I started a course of oral medicine to treat it. The test reassured me.
Unfortunately, my spot grew a bit over the course of three months, reaching the size of a grape. A biopsy and excision were now indicated.
The results were terrible. I had a glioblastoma multiforme (commonly called a GBM) grade IV. This is the most malignant brain tumor; no grade II or III exist. A glioblastoma is what killed Sen. Edward M. Kennedy (D-Mass.) in 2009. While rare, it is the most common of the brain tumors. The prognosis is dismal; on average, patients survive only 14 months after diagnosis even with chemotherapy and radiation. After five years, only 5 percent of patients are still alive.
Surgery is tricky, because the brain has the consistency of gelatin and it’s easy to damage neurologically important tissues. I was lucky in that my tumor was easily accessible in the left temporal lobe, and I awoke from surgery six months after my San Juan seizure with all my senses and functions intact.
My oncologist prescribed a regimen of chemotherapy and concurrent radiation for six weeks, to be followed by continuing chemotherapy once my surgical wound healed. But he did not factor in our joie de vivre. Carmen Alicia and I had been married just six months before my seizure — we’re both in our early 70s — and a few months before this crisis I had sent her an e-mail that said nothing but the word “PARIS” 120 times. She got the hint, awakened me one morning just after the surgery and said let’s go have lunch at the Eiffel Tower. So we did. A few days’ delay in treatment wouldn’t hurt me.