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 re-entering 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, Va., 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.
The 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.
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 grade IV glioblastoma multiforme. This is the most malignant brain tumor; no grade II or III exist. A glioblastoma is what killed Sen. Ted Kennedy 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.
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 email 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.
We spent the week in the City of Louis XIV, visiting the Isle de la Cite and the Sainte-Chappelle stained-glass windows, taking a bateau-mouche trip on the Seine, touring the Sorbonne and seeing Richard Strauss’s “Salomé” at the lovely Paris Opera auditorium. We completed the trip by visiting Monet’s garden at Giverny, holding hands and behaving like young lovers.
Living with illness
The life of a patient with a brain tumor has its ups and downs. I decided to have all my white hair cut off, since it was going to fall out in any case. Radiation to the brain starts with a plastic mask (like an Olympic fencing mask) molded to the face and then placed over it and locked to the stretcher. The radiation treatment is not painful, though the mask induces a bit of claustrophobia; luckily, the treatment lasts only 10 to 20 minutes each session. The chemotherapy, though, is another story: It gave me nausea, lethargy, fatigue, general weakness, muscle aches and tingling in my extremities. It also dropped my platelets and white blood counts, requiring weekly blood studies and left me vulnerable to bacterial and viral infections.
I began to study this tumor in detail, nearly overwhelmed by the massive medical literature on it: I found that more than 22,000 scientific articles had been written on glioblastoma over the past 40 years. So, I concentrated on the most recent 15 years of articles, most of them depressing. It was clear that radiation and chemo, which I was doing, prolonged a typical patient’s life for only a few months. The emphasis now was aimed at modifying molecules in the DNA of the tumor, finding new chemotherapeutic agents.
Why did this tumor happen to me? I never smoked and had had no brain injuries, and there is no history of such tumors in my family. As a cardiologist, I had implanted close to 400 pacemakers in my life and during the procedure was exposed to X-rays. In the early days we used portable X-ray machines and gave ourselves some protection by using thin lead gowns. Nowadays, heavy lead gowns are worn, and doctors and technicians protect their thyroid and eyes with shields and glasses. We also use heavy sheets of radiation-protective glass that hang from the ceiling.
At some point in my research, I was surprised by an article by a Johns Hopkins-trained cardiologist who now practices in Israel. He had collected data on 23 invasive radiologists and cardiologists who had developed tumors, of which 17 were GBMs on the left side of the brain. I wrote to the author, who told me that he had learned of several more such cases since his article was published, and he added mine to his file.
During lulls in treatment, my wife and I escaped as often as we could to Old San Juan, where she has a home. We sang and danced at the San Sebastian Festival, a huge street bacchanal that is celebrated each January. Once, we escaped to my native city, Buenos Aires, and found that the International Tango Festival was happening. Though we don’t dance tango well, we marveled to see the world’s best dancers on the parquet floors.
The Preston Robert Tisch Brain Cancer Center at Duke University has the largest experience on the East Coast with my sort of tumor, so I went there for further consultation and treatment.
As doctors there examined me, it was obvious that my tumor had grown again; in fact, it had quadrupled in size since my initial chemo and radiation. I was offered several treatments and experimental protocols, one of which involved implanting a modified polio virus into my brain.
Duke researchers had been working on this for 10 years and had just received permission from the FDA to treat 10 patients, but for only one a month. (A Duke press release last May explained that the treatment was designed to capitalize “on the discovery that cancer cells have an abundance of receptors that work like magnets in drawing the poliovirus, which then infects and kills the cells. The investigational therapy uses an engineered form of the virus that is lethal to cancer cells, while harmless to normal cells. The therapy is infused directly into a patient’s tumor. The virus-based therapy also triggers the body’s immune system to attack the infected tumor cells.”)
After thinking about this, reviewing the animal studies and discussing it with my wife and children, I decided to do it, becoming the second patient enrolled in the study. I was, of course, worried; during my youth I had seen a lot of polio in Argentina and was acquainted with the ravages of this virus on the neurological system. Now I was having this virus implanted into me.
Heading for surgery
I was given the Salk polio vaccine to prevent a systemic polio infection. Three weeks later, in May 2012, I was ready for my operation. We decided to enjoy the trip from Washington to Duke. We spent two nights in a fancy B&B in Richmond, Va., and visited the Virginia Museum of Fine Arts, where my wife, who has a Ph.D in medieval history, found a 15th-century painting from Bruges and I enjoyed seeing the largest collection of Faberge eggs in an American museum.
At Duke, my skull was opened under local anesthesia and I had the viral infusion dripped through a small catheter directly into the tumor in my brain for six hours.
It is difficult not to get depressed when you are a cancer patient, confronting such things as writing a will or even one’s obituary, all the while dealing with the emotional response of family and friends.
For me, classical music, a passion all my life, has been particularly helpful in those down moments. Beethoven’s quartet Opus 131, Schubert’s piano quintet “The Trout” or a symphony by Mahler helped a lot, though too much Mahler would induce his weltschmerz in me. I switched to Mozart or Liszt at those moments.
I returned to Duke a month after the infusion, and though an MRI showed some expected swelling, the more significant fact was that the tumor had stopped growing. I have gone back to Duke every two months since then, and the tumor, initially the size of a grape, is now a scar, the size of a small pea. It’s been two years since the initial biopsy and radiation, and one year since the experimental polio viral treatment, and I have no evidence of recurrence nor tumor regrowth.
According to a presentation about the research that the Duke doctors gave last May, the results so far are promising: “The first patient enrolled in our study (treated in May 2012) had her symptoms improve rapidly upon virus infusion (she is now symptom-free), had a response in MRI scans, is in excellent health, and continues in school 9 months after the return of her brain tumor was diagnosed. Four patients enrolled in our trial remain alive, and we have observed similarly encouraging responses in other patients. One patient died six months following ... infusion, due to tumor regrowth.” They added: “Remarkably, there have been no toxic side effects ... whatsoever, even at the highest possible dose.”
That has been true for me. I feel as fit as I was three years ago, before the first symptoms of the glioblastoma made their appearance. I remain only on an anti-seizure medication. This fall, my wife and I will travel to Chile and Argentina. Of course, we will try a pisco sour in Chile and a fine Malbec in Argentina. We shall continue dancing and enjoying our lives as intensely as ever — perhaps more so — even though at times it may just be dancing a slow bolero in the kitchen.
As the immortal Chilean poet and composer Violeta Parra wrote: “Gracias a la vida que me ha dado tanto.” Thanks to Life, which has given me so much.