This Is Not Happening'

One day, her husband was a vibrant 38-year-old engineer. The next, he faced a terrifying illness. The author describes a journey into darkness and light.

January/February 1998

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I began the year 1995 as a newlywed. My husband, Tom, was a 38-year-old engineer, musician, outdoorsman. One day in February, nine months after our wedding, I was sitting in my office feeling cozy and busy. My to-do list was accumulating an above-average number of check marks. The phone rang and it was Tom, his voice tight.

"Something really weird just happened when I went to Sam's Deli to get lunch. I was waiting for my grilled cheese sandwich, I went to get a Snapple in the refrigerator, but I couldn't get my hand to the handle. I could move my arm, but it didn't feel like my arm -- my arm went into the twilight zone."

I reassured Tom that he obviously had that weird flu going around. But by the next morning, he was in his internist's office, with the doctor asking him to count by fives and spell the word "world" backward. The doctor ordered blood tests and an MRI scan the following week.

Tom worried over the weekend, but I would not. I was sure he had the weird flu, that it would pass in a few days. I was working and in graduate school. Why should I stop to worry about some flu? I asked him if he wanted me to go with him to the MRI, but he said no, because he knew I had an exam.

On the day of the scan, in between a library crunch and my exam, I phoned Tom. He told me that when he was having the MRI it sounded like his head was inside a washing machine, but otherwise it was not too bad. The technician warned him he might panic, closed in the dark with the machinery against his face. He did not panic. I took my exam and returned home to make us dinner.

I was in the kitchen when Tom came home. We did our usual slow hug, but this hug was different. A thought flared through me like a falling star: This is the last moment. This is the last moment I live in a world where there is nothing wrong with Tom. He pulled away to look at me, and fear spread across the room.

He said, "The doctor called this afternoon. There's an abnormality on the scan, and they want to do another MRI tomorrow, with contrast."

"Abnormality? What kind of abnormality? What's contrast?"

"All he said was that it's a dumbbell-shaped abnormality."

I muttered that an abnormality could be any number of things. I finished cooking, going through the motions, numb.

The next morning, Tom went back into the washing machine for the second scan. Now the doctors wanted to do an HIV test. I thought about the one-night stand Tom told me he had during the time we broke up and quickly calculated how long ago that was: seven years. Surely HIV would have surfaced somehow in seven years. But I still thought, good job, you somehow got AIDS and you've probably given it to me, too. Being irate was easier than feeling the fear.

The doctor said it might be an infection. Yes, I thought. Now that makes sense. In previous months, Tom had traveled overseas to do environmental work -- he could have picked up an infection. He will take antibiotics, and it will go away. I will pamper him until the infection clears.

The following day, we drove from our home in suburban Maryland to Washington, D.C., for an appointment that Tom's internist arranged with a doctor named Mancini. Only a week had passed since the twilight zone incident at Sam's Deli. I asked Tom if he knew what kind of doctor Mancini was. He did not know.

When we reached the office building, we wandered slowly down the hall. Finally, I saw a wooden door with gold letters: "Edward Mancini, MD, PhD, Neurosurgery." I opened the door, and Tom went to the reception desk. A woman marched from behind the desk and introduced herself as Sharon. She led us through the waiting area and into a conference room with a large table. I wondered why we were receiving special treatment. Then Sharon told us that the HIV test was negative. I looked for the feeling of relief but could not find it inside me. Sharon launched into a pep talk about taking life one day at a time. I wanted to yell at her, what the hell is wrong with my husband? Underneath, I seethed with terror.

Sharon took us to an examining room, and I sat by the door with pen and notebook. Tom sat in a chair across the small room. I willed time to move in reverse, or at least stand still. Let's just stop everything right here.

The doctor charged in with a large manila folder and brought out six 14-by-17-inch black sheets of plastic. He slapped one of the sheets onto a light board on the wall and flicked the light on.

There were 24 pictures of Tom's head, in profile, cross sections taken from left to right. I recognized the outline of Tom's face, his features clear. On most of the cross sections, his head was filled with gray wormy brain stuff, even and homogenous. But one cross section was different. Near the back of his brain were a nickel and a dime, resting in the gray, shining as if a flashlight were aimed at them. Two glistening coins. I thought, this is not happening. The scans were mixed up! But the faces outlined on the scans were Tom's, all 24 of them.

Mancini pointed at the coins as he spoke, "This doesn't belong, and it isn't good. You need an operation. I've scheduled it for early next week, and there's no way to know the next step without having actual tissue."

Mancini commented that even though there appeared to be two lesions, it was probably one lesion with the connection not visible on the scan. He called it "huge." I scribbled in my notebook as he spoke: left parietal lobe, near the motor strip.

Tom was swallowing repeatedly, staring from the scans to the doctor and back. I protested that Tom had been out of the country, couldn't it be a weird infection? Mancini said this was unlikely. An outside possibility was a parasite.

Mancini recited the plan for surgery. He would shave hair, cut a window of skull, and remove the lesion from Tom's brain. He summarized the bottom line: "This is a slam dunk: You've got a big rock in your head, and it needs to come out." Later I would look over my notes and see the words SLAM DUNK and BIG ROCK stretching over almost a whole page.

Tom and I staggered out of the office gripping each other, gasping for air, light and our life. We descended to the dark, dusty garage and climbed into our car. I rested my head on the steering wheel and sobbed. Tom said, "I'm sorry," over and over.

Tom and I spent most of Saturday on the telephone. When I called my family and friends, I was blunt and unnaturally calm, like a radio announcer giving instructions during an emergency. I would say, "It appears that Tom has a brain tumor. He is having surgery on Tuesday." When Tom reached friends or family on the phone, he would choke out an emotional, roundabout summary, beginning with his experience at Sam's Deli. When Tom reached Wayne, his friend listened and then took a long pause and replied, "So, I guess you'll be marking that surgery on your calendar." Tom laughed hard and then scribbled "BS" for "brain surgery" on our calendar in the box for February 28.

Tom explained, "The last couple of years have been great, but I really struggled. I struggled so much to change, and I worked so hard emotionally. I did it, and now I finally feel good. I purged a lot of negative stuff that I've carried around -- anger and fear and not feeling love. I moved through it and finally I feel good, but maybe some of the negative stuff that I was purging wasn't totally released and now it's a tumor. So I'm glad I'm having surgery. My negative stuff is concentrated in this tumor, and it's going to be removed. I want it all out. I want to ask Dr. Mancini how long it's been there, when it started growing, to see if it fits in with anything that's being going on in my life."

Sunday night, Tom and I rested on our bed, and Owsley jumped up between us. Owsley is a border collie mix Tom had rescued from the pound several years earlier. Tom and Owsley fell asleep, and I went to our computer. I logged on to our online service and typed "go PDQ." PDQ -- Physician's Data Query -- contains "patient" files and "physician" files. I found a "patient" treatise called "What Is Adult Brain Tumor?" which explained that malignant cells can grow in the tissues of the brain. I stopped on a description of "astrocytomas":

1. Noninfiltrating astrocytomas are tumors that grow slowly and usually do not grow into tissues around them.

2. Well-differentiated mild and moderately anaplastic astrocytomas are slow growing, but grow more quickly than noninfiltrating astrocytomas.

3. Anaplastic astrocytomas have cells that look very different from normal cells and grow more rapidly.

4. Glioblastoma multiformes are tumors that grow very quickly and have cells that look very different from normal cells. Glioblastoma multiforme is also called grade 4 astrocytoma.

I deduced that these were the four grades of glioma that Mancini had described. Next, I left the "patient" files and accessed the "physician" files. The physician files had five-year survival statistics that the patient files did not have:

1. Noninfiltrating astrocytomas: 50-85 percent

2. Well-differentiated mildly and moderately anaplastic astrocytomas: 41-51 percent

3. Anaplastic astrocytomas: 18-48 percent

4. Glioblastoma multiforme: 0-10 percent

In all my years as a worrier, I had never thought to worry about brain tumors. I had covered car accidents, airplane crashes, kayaking mishaps, home improvement fiascoes involving electrocution and a wide variety of diseases. How did I miss brain tumors? Later I would read that grade 4 tumors, glioblastoma multiforme, are capable of doubling in size every seven days.

I doused my panic. I reasoned, for three out of the four possibilities, long-term survival is in the range of 50 percent or more. Piece of cake. Give Tom a disease with a 50 percent chance of beating it? No problem. This will be a scary blip in our lives, but we will move on and be stronger and wiser after the experience.

I returned to Tom and Owsley and told Tom that I had researched gliomas. I told him that one of the four kinds is pretty bad, but the other three are not so bad. He was not at all interested.

The next day, I took Tom to the hospital for blood work and paperwork. Three different people asked how he "presented," which means how it all started. A nurse drew blood, and then she led Tom away for some tests while I remained in the examining area. The nurse left Tom's chart, so I grabbed it and started reading, leafing through the already thick pile of paper. Like a kid with a forbidden book, I was reading fast and listening for footsteps. The radiologist's report from the MRI scan had a fax cover sheet on which someone had scrawled in big dark letters: URGENT. I focused on its last paragraph:

There are four contiguous enhancing lesions measuring 4 cm, 1.5 cm, and two lesions about 1 cm in diameter. Because of the multiplicity of lesions, an inflammatory lesion such as multiple abscesses is likely if the patient is immunologically compromised (HIV+). The possibility these represent multi-focal glioblastoma multiforme could not be excluded but is felt to be slightly less likely.

My mind raced: We now know that Tom is not HIV-positive. The radiologist does not mention benign or low-grade tumor, or any other type of tumor except glioblastoma. Glioblastoma. Four lesions. Four. Glioblastoma.

The nurse returned without Tom and found me shaking and crying. I told her I read the chart, and it said glioblastoma. She told me there was no way they could tell before surgery, not before they took it out and examined it.

The next morning, we returned to the hospital. A nurse gave us a large plastic bag, escorted us to a curtained space, and then pulled out Tom's chart, "OK. Yes. Craniotomy. Dr. Mancini. He's not known for his personality. Now take off all your clothes, and I mean everything, and put this on." She tossed Tom a skimpy blue gown with snaps down the back.

Sitting there, nearly naked, about to be taken for brain surgery, Tom was profoundly vulnerable, helpless. Would he put his clothes on and waltz right out of there? No. The two of us would wait, quietly, and then they would take him, and I would be left with only blind trust in strangers and machines.

After about an hour, a man pulled open our curtain and led Tom onto a large wheeled stretcher. I walked alongside until we reached the basement where the anesthesiologist was waiting.

I kissed Tom, "Love, I will see you soon. I will be right here. I will see you after the surgery. I love you."

Tom replied, "I love you. Don't forget to eat something, OK, Honey?" Then he looked away and I walked away slowly, without looking back. I missed Tom immediately, and I felt far away from him, as if he were being held hostage in a foreign country. I was angry we had not seen Mancini. It stunned and hurt me that he might cut through Tom's skull and into his brain without talking to us beforehand.

Tom and I had decided that only my sister, Meg, and his sister, Ann, would wait with me during surgery. Tom didn't want his brain surgery to be "an event." When Meg and Ann met me in the waiting area next to the neuro ward, I did not tell them what I had read on the chart. After all, there was still the possibility of infection. Hope coexisted with bottomless dread. Time morphed into a thick, gooey, unfamiliar substance.

After seven hours, I glanced up and saw Mancini, who had already changed into his business suit. Mancini said, "Who's the family?" looking confused and annoyed, as if we were supposed to jump up and present him the person with whom he needed to speak. I walked with him out to the hall. I stood close to the doctor, leaning against the wall next to the elevators.

Mancini said, "The surgery went well. I removed all of the larger tumor, but I didn't go in for the smaller one, because it would have hurt him. We did the frozen pathology. There will be a more detailed pathology report. But, it's a 4."

I stared at him, wanting more, and he said, "With a glioblastoma -- that's a grade 4 -- most people don't live two years. However, I know of people, maybe five or six, who have lived five, seven, nine years. I even knew one guy who lived 20 years and then died of a heart attack."

I said, "I know about it. I looked it up in the PDQ." I thought showing that I was knowledgeable might get me more from the surgeon. But he did not have anything else to say to me, and he started to walk away.

I asked, "How long has it been growing? Tom wanted to know."

Still walking, he replied, "I don't know. Maybe six months, a year, maybe longer. I don't know."

I said thank you, and Mancini completed his departure. I staggered back to Meg and Ann and reiterated what the doctor said. Then I slumped forward, buried in a mudslide of pain. I whimpered, "I can't do it. I can't do it." I meant, I cannot go on. I cannot exist. I cannot breathe or swallow or blink my eyes. The strange thing was that I did continue to exist. Perplexed, I thought: My ancestors ran from wild animals -- perhaps there is something deep inside me wired for this. Maybe it is an instinct, from evolution. Maybe it is God.

I felt adrenaline surge and gush. I moved toward the neuro ward with a fierce need to see Tom. I thought, he was not one of those killed in that plane crash last week. He is here, now. I was hyperaware, in an altered state. What was in front of me was all there was. This is happening. Here I am. Now is now.

He opened his eyes and said, "Hi, Honey."

"Hi, Sweet," I said.


"Hi. You're doing great. You're doing just fine."

"Did you eat?" he asked.




Tom smiled, "Good." He was groggy from the anesthesia, and he drifted back to sleep.

Then he drifted awake, opened his eyes and said, "Do you love me?"

"Yes. I love you. I love you. I love you."

He sighed, "I'm sorry. I'm sorry. I'm sorry we didn't get married sooner."

"No, Sweet. We did what we did, and it was fine. We're OK, everything worked out just right." I lowered my head on Tom's chest as he wafted back to sleep.

A few minutes later Tom opened his eyes and asked me, "Is it a 1 or a 2?"

"It's important that you rest. We can talk about all this tomorrow."

"What is it?"

"Let's wait until tomorrow. . ."

"Did you talk to Dr. Mancini?" he asked.


Tom's voice grew more insistent, "Did he tell you what it is? Did you talk to him?"

"Yes. Sweet, you just had a big surgery. You're doing great, but it's important for you to rest. We can talk about all this tomorrow. We can talk to Dr. Mancini tomorrow."

He persisted, "What is it?"

I felt extreme pain and panic. I envisioned walking toward a door: I am in our sunny life with my hand on the door knob. I open the door, cross over the threshold, and step into deep, dark, starry space. One thought came to me: I must not lie. No matter what happens, I will stay with the truth.

"What is it? Is it a 1 or a 2?" Tom asked.

"No," I replied firm and clear.

"Is it a 3 or a 4?"


"Hmm." Tom fell back to sleep. He would ask me the question twice more in the next 24 hours, needing to hear the answer several times before it registered.

When my sister pulled me gently out of the hospital later that night, the world was dark and cold and eerie and not the world I used to know.

I changed that day. I would change more over the coming five months with Tom, as he journeyed through more surgery, treatment, hope, despair, decisions, debilitation and, finally, death. This piece of the story tells you how it started. These were the first slow-motion moments when my life jumped off its track, when I started to live a life that is not the one I had planned.

My perspective shifted, and at the core of the shift is a paradox. I am not in control; I can strive for certain secure endpoints, but they are illusions. Facing this was deeply frightening, but also freeing. At the same time, I am responsible for my actions, and every moment presents real choices. That Tom and I met, that he was who he was, that a tumor grew in his brain and he died -- these are all events beyond me, events of mystery. The work we did in our relationship, how we developed as individuals, and how we handled Tom's illness and death -- these were actions and choices, and they were important. Many of our choices involved a central challenge: to take what life presents and explore it in full, keeping the heart open even when it is breaking.

After Tom died, I wrote for six months. Every day I wrote, until I had nourished every detail, living it over until it transformed from pain to almost wonder, and healing. My grieving and recovery have been an ebb and flow of darkness and light. The dark times have been darker than I ever imagined, but the light times have been more brilliant than I had ever known.

Mary Catherine Fish, '85, is an environmental consultant. This selection was adapted from her recently completed memoir.

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