Receiving the News

You have heard Marilyn’s take on this subject (Garbled Words); I want to provide my perspective of that moment when we were given Faith’s diagnosis.

I made a note of the time when we were given Faith’s diagnosis: Saturday, April 29, 2000 10:25AM. I can tell you who gave us the news. I can tell you the location and who was in attendance. But it is difficult for me to replay exactly what we were told. The words that the doctor used were too foreign and too horrible to remember. However, I have tried to remember everything else.

We were not unprepared for bad news. At first, Faith’s symptoms were mysterious: her left eye could not turn outward; she stumbled a bit more than seemed normal. Then her symptoms turned quite serious: she couldn’t run more than a few steps without falling (and falling hard). She was clearly not well. We had a feeling that our journey to discover what was wrong would take us places we had never been before.

We had taken Faith to our optometrist in late February 2000. On several occasions I had noticed something which concerned me. It was hard to describe the problem…an odd motion in one of her eyes. It didn’t happen all of the time; perhaps I was mistaken. The doctor could find nothing unusual. We returned in early April. This time the problem was more pronounced. We were referred to a specialist.

At 9:15AM on April 25, we brought Faith to a pediatric ophthalmologist. He seemed to be a quiet man by nature. However, as the examination proceeded, his demeanor became increasingly subdued.

As we left the office, he and his staff stood together quietly and watched us go. ("How odd", I thought.)

At 10:00AM on April 28, we had our appointment with a pediatric neurologist at New England Medical Center. Because this is a teaching hospital, Faith was given a set of standard neurological tests by a resident. (Faith was to receive the same battery of tests many times over the next two weeks.) Following her examination, the neurologist returned and examined Faith himself, again performing many of the same tests. Faith was then returned to the waiting room while we sat with the doctor and the resident.

I had the impression that, once again, the medical experts knew what the diagnosis was. But the drama would have to unfold according to some protocol with which we were as yet unfamiliar. As we left his office, the doctor and his resident watched us go. Again the mood seemed unnaturally quiet.

That night Marilyn explored her Merck Manual, trying to guess the most likely diagnosis based on what the doctor had said. She finally decided on M.S. This seemed more palatable than the other likely choice: cancer. We managed to get a little sleep that night. We were not unprepared for bad news. But we had a little hope.

At 8:30AM on April 29, Faith had her MRI. It was to be the first of almost a dozen such MRI’s she would receive over time. The MRI took about an hour. We then had to wait until a radiologist read the scans. A little after 10:00AM, the neurologist and his resident joined us and escorted us back to his office. Faith was placed in the waiting room and we all took the same positions in the office as we had the previous morning. I looked very carefully at the resident. Her face was now ashen. She sat somberly in her corner, and let the doctor convey the diagnosis.

He spoke very calmly and very professionally. He said the word neoplasm. He said a number of other words. We were not unprepared for bad news, but none of the medical terms meant anything to me. My first glimmer of understanding came not from the doctor, but from Marilyn. At the word neoplasm, she collapsed in tears. I felt like I had been left behind. I didn’t know what was going on or how to support my wife. I sat very quietly waiting for enlightenment. After a while, Marilyn raised her head and said the words that gave me my answer: "Why does everyone in my family have to die of cancer?" (At this moment, the resident rushed out and returned with two cups almost overflowing with water. "How is this supposed to help?" I wondered.)

The doctor spoke some more. He said: pons, glioma, inoperable, 9 to 12 months. The doctor insisted that we look at the MRI’s. I said no. But we all went out in the hallway and he put the scans on the light box. I refused to look. It was too much to confront. In time we would get quite used to looking at Faith’s tumor. We would want to look: how big was the tumor mass; how large were the ventricles. But at that moment, I wasn’t ready.

After giving us Faith’s diagnosis, the doctor left the room briefly to allow Marilyn and me to be alone. We were staggered by the news. We had a very limited (and yet grossly exaggerated) understanding of what was involved with the treatment of cancer. We asked each other: How can we put Faith through treatment (with its implied pain and suffering)? It suddenly hit us: How can we love her and not do something?

We were not unprepared for bad news. But we were not prepared, in any sense, to deal with the blow that we received that day. That moment seemed to warp the very definition of time. The moment where Faith was trapped between what was and what will be. We could not go back in time to when she was whole. We could not know exactly what would happen, and yet there seemed to be no future. We have spent the last eighteen months trying to rack up as many days for Faith’s future as possible. Above all, we have spent this time learning how to turn our love into the care that Faith has needed.