A Fresh Start After Tumor Surgery

Johns Hopkins patient Pat Bernstein describes her remarkable journey to health.

Published in Dome - November 2015

The growth nestling in my cranium had been developing steadily for 10 to 15 years, eventually becoming the largest tumor the surgeon had ever seen. Multiple operations, the location of the tumor and the near-death challenge preceded a mystical walk in the forest that may have predicted the subsequent changes in my behavior.

During the years the tumor grew, I was oblivious to its presence, my attention centered on the nonprofit organization I created and managed, one that teaches investment skills to middle school students; conducting consultations; and interacting as a wife, grandmother and friend.

A slight bulge on my left temple first suggested a problem. Complaints of occasional headaches, balance issues and memory problems sent warning signals that eventually encouraged an appointment with a neurological consultant, who identified signs of early memory loss. Her recommendations for cognitive skill exercises were ignored.

As the tumor grew, subtle symptoms became more pronounced. My children complained of my constant repetitions, and my husband had little tolerance for my forgetfulness. He took the brunt of my negative attitude, which included a lack of respect for his thought process and impatience with his actions.

The do-it-now person I had been faded into a negative and unproductive self who would often sit in the den for extended periods feeling physically and mentally fatigued. Regular morning walks with friends became infrequent. 

Without any other side effects, I ignored my tendencies toward constant repetition, forgetfulness, listlessness and depression. The red flag only went up the day I displayed an erratic walking pattern. The MRI scan that ensued showed a dominating mass on the left side of my head. With a troubled voice, the doctor warned, “You have a very large tumor.” And that night, I was in the hospital awaiting surgery.

Hearing the diagnosis, I turned on mechanical rather than emotional responses and maintained this approach during hospitalization. The smiling, laughing and easygoing rejoinders delighted the hospital staff and eased my family’s processing. It also postponed my coming to grips with the traumatic operation.

The huge tumor, identified as meningioma, sat in the left front of the temporal sphenoid wing, better recognized as the left side of my head just above my ear. Located in the cranium, it leaned against the brain with tentacles spreading in all directions.

According to the Brain Science Foundation and the American Society of Clinical Oncology, meningioma accounts for about 34 percent of all primary brain tumors, and it most often occurs between the ages of 30 and 70. It is twice as likely to appear in women as men, with male tumors more likely being malignant. Well-known individuals who have experienced this tumor are actress Mary Tyler Moore, who underwent surgery in May 2011 to remove a benign meningioma, and singer-songwriter Sheryl Crow, who revealed the diagnosis to an audience in 2012.

The tumor’s location against my brain was critical. The brain has four lobes, each with specific functions. The frontal lobe controls creative thought, problem-solving, muscle movement, intellect, parts of speech, emotions, smell and personality. The parietal lobe processes movement, language, reading, tactile sensation and sensory comprehension. The occipital lobe is primarily responsible for vision. And the temporal lobe is associated with perception and recognition of auditory stimuli, memory, behavioral elements and language. 

In addition to the tumor’s location, the other crucial challenge was its size. This became apparent to Dr. Jon Weingart, the leading neurosurgeon from The Johns Hopkins Hospital. Soon after starting the operation, excessive bleeding became a life-threatening challenge, as it could not be controlled.

The tumor was “insanely vascular,” he noted, and the situation resulted in three blood transfusions. Swelling forced a shift of the entire left side of the brain over to the right. And the uncontrollable bleeding conditions demanded a critical decision: whether to continue the surgery, though the circumstances were extreme and there was a risk of my dying, or to discontinue the procedure, leaving time to re-evaluate. The surgery was stopped with the tumor only partially removed.

I was kept in a medically induced coma for three days while tests were performed to locate the cause of the bleeding and determine how it could be addressed without compromising any critical brain functions. An embolization achieved the desired results.

Dr. Weingart’s comment at this stage was, “The case had significantly increased difficulty secondary to the vascularity, the large size of the tumor and the significant reconstructive needs.”

The follow-up operation lasted five hours. When standing by my bedside afterward, Dr. Weingart reported the tumor was bigger than any he had encountered, was benign and had been totally removed. Three days later, I was sent home.

I didn’t stay long.

Within days, I awoke with a skin rash all over the front and back of my torso, causing

extreme itchiness. It looked like a massive invasion of red worms. I returned to the hospital where, for the next four days, they treated an allergic reaction to Keppra, the medication that prevents seizures, and in my case, caused damage to the liver. The extreme allergic reaction plastered over my body was such a noteworthy display that staff physicians were brought into the room to see this textbook case.

The months necessary for recovery included multiple doctors’ appointments, physical therapy, and a slow and patient struggle to regain energy. The highlight was the lack of physical pain. A pronounced zipper down the center of my shaved scalp marked the incision and served as a constant reminder of the surgery.

This post-surgery phase gave me time to reflect on the experience and finally confront its emotional impact. The mystic moment kept being replayed. It happened as I emerged from the final surgery, when the anesthesia wore off. A bright, white, rectangular scene flashed before me, displaying a dense, snow-covered forest. Walking down a pathway in the center was a woman with her back to me as she exited from the site. As quickly as the image appeared, it vanished. Was I that woman who symbolically departed from the person I was? Or did she represent the woman going toward the person I was to become?

Today I recognize possible consequences associated with that mystic moment in the form of behavioral changes. I wonder whether her walk represented these new directions. Previous severe self-criticism now surfaces as feelings of optimism. My conversational pattern now features constant humor that had been absent, and I’ve become fastidious around the house—casting aside my prior tendency to overlook and be negligent. My determination to eat healthy food has the curious addition of a yen for ice cream.

Perhaps the most notable change is my reaction to people’s expressions of caring. Since childhood, I would consciously dismiss believing words of praise, interpreting them as polite but insincere. Now, compliments often produce tears accompanied by emotional pangs. The relationship with my husband is more open, with a resurgence of the respect and loving exchanges we had when first married. 

“The dramatic improvement in her brain function and resultant change in her persona are what is most remarkable for her personally,” says Dr. Weingart, reflecting on the surgery. 

Is it logical to link these changes to the woman’s departure through the forest? Was this tied to the tumor pressing against the frontal lobe, which impacts personality? Was she leaving who I was and ready to confront the woman I was to be?

Major surgeries are often accompanied by difficult and detrimental side effects that impact the productivity of the individuals, Dr. Weingart said. The surgery I had defied that formula, instead producing positive, enviable and desired results that leave me smiling.