IN THE SUMMER of 1992, when he was fifty years old and six months into a happy second marriage, Harvey Sandler developed a disturbing set of symptoms. His vision became blurred, he would wake up in the middle of the night drenched in sweat, he began to urinate frequently, and he became impotent. The last change was the most disturbing, because he and Phyllis, his new wife, had enjoyed a passionate sexual relationship for some time. “It got more and more difficult for me to perform,” Harvey remembers, “so I just stopped coming to bed.” He chalked it all up to stress and did not visit a doctor.
Phyllis says, “I didn’t want to pressure him, but after a while it got me down.” Harvey’s job as a money manager gave him some stress; but in Phyllis’s words, “Really, our lives were pretty good.” After several months, Harvey sought help from a psychiatrist specializing in sexual dysfunction. She suggested blood tests, one of which, for a pituitary hormone, was abnormal. Then an eye doctor ordered an MRI scan of the brain, and this test revealed a tumor directly behind Harvey’s eyes. In this location it was pressing on the hypothalamus, a vital center that controls the pituitary gland, and through it, many involuntary functions of the body. It was also affecting the optic nerves.
From its location and appearance, Harvey’s doctors thought the tumor was benign—either a glioma or a craniopharyngioma. The former is a solid tumor arising from cells that support neurons. The latter arises from embryonic cells left over from fetal development and tends to be cystic, containing fluid-filled sacs in addition to tissue; it usually appears in people younger than Harvey, but may grow slowly for a long time before it reaches a size that affects brain function.
The brain is one part of the body where the distinction between benign and malignant tumors is not as immediately important as it usually is. The problem here was a space-occupying lesion, exerting pressure on vital centers in a confined area. It would have to be removed or shrunk.
Harvey and Phyllis made the rounds of neurosurgeons in New York. Most were “very alarmist” about the tumor and prospects for removing it without causing permanent brain damage. “Finally we found one neurosurgeon who told us what we wanted to hear,” Phyllis says. “He told us the operation would be ‘a piece of cake,’ and he could have Harvey in and out of the hospital in two days. We decided to go with him.”
The operation took place in November 1992. When exposed, the tumor turned out to be the size of a small egg, situated between the optic nerve and the hypothalamus. The surgeon, unable to remove the tumor because of its location, drained fluid from it to reduce the pressure it was causing and took a sample of the tissue, which identified it as a craniopharyngioma. He then sent Harvey for thirty radiation treatments to shrink the tumor, ending just around Christmas.
To everyone’s dismay, the patient got worse as treatment progressed. His vision deteriorated to the point of near blindness, leaving him unable to read anything or see what was on a television screen. To prevent brain swelling, doctors had prescribed Decadron, a strong steroid; it caused Harvey to gain forty pounds and changed his personality. “He was angry, aggressive, and nasty and slept most of the time,” Phyllis says. Harvey says only, “I don’t remember any of it.” He began to lose his memory and his mind. He would get lost in his apartment, describe events that never happened. “I didn’t know who this person was,” Phyllis recalls. According to the doctors, none of this should have happened, and they had no explanation for the deterioration. “Nobody would take responsibility for it, either,” Phyllis says. “The surgeon said, ‘I’m only the carpenter here; my job is done’; the endocrinologist told us to see the neurologist, and the neurologist told us to see the endocrinologist. I got really scared.”
About this time, a counselor named Deborah, who is skilled at working with seriously ill people, took Phyllis away for a weekend break, arranging for Harvey’s son to come in and care for him. Deborah’s brother was a distinguished neurosurgeon in Philadelphia, and he was called in for another opinion. After reviewing the case, this doctor told his sister: “Harvey Sandler will never make an independent decision again in his life. He will never recover. You should try to prepare Phyllis to accept his condition; it will be lucky if he stays the same and doesn’t deteriorate further.”
Phyllis became hysterical when Deborah reported this conversation, and as Deborah recalls: “Phyllis screamed, ‘There’s no way he’s not coming back!’ I said, ‘Okay, I’m with you,’ but in my heart I didn’t believe it.”
Phyllis returned home feeling she could not afford to waste time. “I called all the smartest and best-connected people I knew,” she says, “always asking for help. I told them I had to find the one doctor in the world who had done more of these procedures than any other. Well, I got sent on one wild-goose chase after another. I talked to doctor after doctor. Finally, I found one who seemed right, but he specialized in aneurysms, not tumors. Then the eye doctor called me and said, ‘Time is of the essence. What vision he has left is going.’ I dragged my poor husband from doctor to doctor, even though he was exhausted and never wanted to go out. Usually, I had to dress him and half-carry him, and usually he fell asleep in the doctors’ offices; once he wandered out of an office and got lost. Finally, I found a neurosurgeon who was willing to operate, one who had done a lot of these procedures and wasn’t put off by such a high-risk case.”
The second operation to remove the tumor took place in mid-February 1993. Harvey did not wake up for a long time after the surgery. Then he almost died from fluid filling his lungs. On the fourth day after the operation he lapsed into a coma, and the doctors again were at a loss.
It was Phyllis who saved the day. She wondered whether Harvey’s coma might be the result of withdrawing him from Decadron too quickly. The drug is used short-term to prevent brain swelling after surgery, but this team of doctors did not know that Harvey had been maintained on very high doses of Decadron since the previous operation. When Phyllis pointed that out to them, they tried giving Harvey some Decadron intravenously. The next morning he was sitting up and talking. He stayed in intensive care for two weeks, in a regular hospital room for another two weeks, then began a long and steady recovery.
“It took him a whole year to catch up,” Phyllis says, “and he remained amnesic for the three months prior to the second operation. Slowly he got stronger physically and recovered some of his memory. He had to develop a whole new way of thinking and approaching life. He had to learn what had happened to him, then to be frightened about it, then to be reborn.”
Deborah remembers Harvey’s frustration during this period. “Everyone expected him to be transformed by the experience,” she recalls, “but it seemed that everyone but him got transformed. Harvey had had it all. He was rich, successful, good-looking, enjoying life immensely. His friends were deeply affected by what happened. Almost overnight, he turned into one of life’s unfortunates: brain-damaged, overweight, angry and abusive, disoriented, with a good chance of dying or being a vegetable. People said, ‘If this can happen to him, it could happen to me.’ It really got people thinking about their vulnerability and motivated them to clean up their acts. Now, after the second operation, the more Harvey heard about the effect he had had on others, the more he resented the fact that nothing magical had happened to him.”
Phyllis spent time every day trying to help Harvey learn to walk again. He would fight with her a lot and remembers her asking him constantly, “So what’s different now? How is your life changed as a result of all this?” All he could think to say was, “I just want to get back on the tennis court.”
About a year after the second operation, the magic happened. In Harvey’s words: “I started thinking. I had always let Phyllis do the thinking for me, and I had always shied away from power and responsibility. Now it seemed the tumor and the surgery had reawakened parts of me that had been asleep and at the same time lessened other parts of me. My ability to perform sexually came back six weeks after the operation, but my sexuality in general was diminished. I think it had been too dominant before. On the other hand, thinking and emotion increased. In general, I felt more balanced. To make a very long story short, I’ve assumed responsibility for my life. I’m a more responsible human being now, and I’m using my power appropriately. This illness is one of the biggest gifts I’ve ever had.
“On a practical level, my vision is better than it was before, and my memory is excellent. I’m working and playing and living much more the life I want to live. I’ve changed my work so that I can stay at home and don’t have to go in to an office. I play tennis every morning.”
I also talked to Phyllis about her perspective on the saga. She said, “Throughout the darkest days I remember thinking, ‘There are going to be gifts coming from this, and I’m going after every one of them.’ We were very isolated during that period; I didn’t let many people into our lives. If I had believed the doctors all knew more than me, I would have accepted their pessimistic outlook and not kept pursuing the possibility of a cure. It’s hard to believe they don’t know it all. The surgeon who finally took us on told me he couldn’t guarantee that Harvey would live or have any vision or even recover consciousness. He is as surprised and thrilled at the extent of the recovery as anyone else. A year after the operation, we invited him and his wife to come for dinner and celebrate with us.
“Really, Harvey has been reborn. He was given a chance to redesign himself, and he’s come out a more generous person, someone who is more sensitive to people and wants to be the best person he can be. I’ve been reborn in the process too. Our adventure has inspired both of us to keep trying to heal the parts of ourselves that are not yet healed. We are still processing it and appreciating it.”
Phyllis wanted me to know that this was not the first dramatic healing she had witnessed. “Seven years ago I developed excruciating sciatic pain. I had it for two and a half years and went to more than twenty doctors but could get no relief with any of the treatments they prescribed. Then my first grandchild was born, and I really wanted to be with the baby. I knew I had to make myself better if I was going to be able to enjoy being a grandmother. I listened to tapes, visualized, got acupuncture, ate healthy food, and took vitamins. In just four weeks I was pain free, a hundred percent. I think the most important thing I did was to visualize more blood going to my back. That and telling myself, ‘I really want to be healed.’ ”