Diary of a Brain Tumor Patient's Wife

By Renette Davis
� 1999

My husband, Paul Duane Davis, had a malignant brain tumor in the left temporal lobe. We had no idea that anything was wrong until he had a grand mal seizure on May 30, 1997. He was getting ready to go on a bicycle trip, and when I went up to our bedroom to see how the packing was coming, he said, "I'm ... I'm ..." and couldn't say anything else.

I sat down on the bed and said, "Something's wrong, isn't it?" He nodded his head, "Yes," and I said, "I'm taking you to the doctor." I thought he had had a stroke, and I had read someplace that there is medication which helps prevent permanent damage if it is given right away.

He was able to put his socks and shoes on, and I drove him to the emergency room of St. James Hospital, which is about 3 miles from our home. When we got there, Paul said, "No." I just said, "If you're ok, they'll send us home," and jumped out of the car. I went running into the emergency room and said, "Something's wrong with my husband."

They came out immediately with a wheel chair, asking me on the way what was wrong. They whisked him into a back room while I filled out papers. When I was finished, they let me go back where he was. The doctors were asking me questions about what his symptoms had been, etc., when all of a sudden I saw his face start to contort and heard one of the nurses saying, "He's seizing."

There were about 6 doctors and nurses around him right away. I stepped back and sat on a chair which was nearby. He had what I later learned was a grand mal seizure. It was the scariest thing I ever saw in my whole life. When it was over, he fell into a deep sleep, and someone asked if I was ok. I realized that I had been holding my hand over my mouth the whole time, I suppose to keep from screaming. I said I was ok and asked if I could use a telephone to call our minister and Paul's family.

They did all kinds of tests to find out what had caused the seizure, and everything seemed to be ok. The next day they did an MRI, and it showed a small lesion in the left temporal lobe. The neurologist said it could be a tumor, it could be the result of a stroke, or it could be encephalitis. They decided to treat him for encephalitis because if it was that, it needed to be treated right away.

On July 8, they did a second MRI, and it showed the lesion was larger. That meant it wasn't encephalitis, but was a tumor. They did a biopsy on July 14, and the results showed that Paul had a Glioblastoma Multiforme Grade IV tumor.

Paul received radiation treatment, chemotherapy, and radiosurgery, which is a high dose of radiation directed right at the tumor. He tolerated the treatment very well. He continued to work at The University of Chicago Hospital as a computer programmer in the Radiology Department and had a good quality of life for a whole year.

At the end of July, 1998, he had a bicycle accident and broke his collar bone and 3 ribs. He was starting to have some difficulty remembering how to do things at work, so we decided it was time for him to go on long-term disability. I cut my work at The University of Chicago Library to part-time so I would have more time to do things for and with him. He continued to enjoy many activities such as singing in the church choir and a community chorus.

In January, 1999, I began a family medical leave of absence from my job because I was no longer comfortable leaving Paul at home by himself. He seemed to be declining quite fast, and we signed up for Hospice. We had wonderful support from Hospice and from the many friends and family members who came to visit us.

Paul died peacefully at home on April 11, 1999. He was 52 years old. Our daughter, Karen, was 18 and our son, Philip, was 22 when he died. We miss him very much. This has been a hard road for all of us, but we are helping each other through it, and I think we will be OK.

Throughout his entire illness, Paul never said, "Why me?" He did get angry at times and he was very sad at times, but he never lost his faith in God. I know it was the many prayers of friends and family members which helped Paul and me get through each day and I believe they will help all of us in the days to come.

The following documents are copies of email messages which I sent to friends and family during Paul's illness and after his death. I decided to put them together into a diary, hoping that they will be helpful for someone else whose loved one has a brain tumor like Paul's.

The Beginning

Radiation and Chemotherapy

Tumor Growth - New Options for Treatment

Dilantin Reaction

PCV Chemotherapy

Radiosurgery

Thinking about Thalidomide

Tumor Stable

Side Effects from Chemotherapy

Increased Symptoms

Bicycle Accident

Tumor Growing

Trying Clinical Trial

Trying Tamoxifen

Tumor Growing

Symptoms Getting Worse

Preparing for Death

Death and Memorial Service


Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: May 1, 1999
Last updated: July 21, 2010