Brian O.

Diagnosis: Burkitt's Lymphoma, Stage 4
Treatment: Magrath Protocol - Several kinds of chemotherapy

Profession: Construction Superintendent

On January 5th, 1999, I woke with a sore back. I had previously had back problems, but this was different. MaryLou suggested I stay home from work and see if it got better. After a two-hour nap, I woke up with double vision. We called the doctor immediately and he said to get it checked right away. The other thing that was unusual was a tingling on my chin. We had gone cross-country skiing over New Year’s and I thought it was from the cold.

I went to Mass. General, which was the first of a lot of blessings. I went in through emergency. We were there well into the evening. The first doctor we saw was ready to send me home and make an appointment at Mass Eye and Ear.

MaryLou: First they thought it was a stroke. Then they did an MRI of his brain and ruled out aneurysm, brain tumor or stroke. They thought the double vision was just optical nerve damage and at first didn’t connect the back pain. But the rule is that when they call neurology a patient can’t be discharged without an attending physician looking at him. The attending physician was Leslie Shinobu. I think she saved Brian’s life. She told him because there were three neurological symptoms – the back, the vision and tingling jaw – she wanted him admitted.

Brian: Within hours, the pain in my back was unbearable. They gave me lots of medication, which made me fuzzy. During the next eight days they did many tests – scans, MRI, Eye and Ear exams, blood work, spinal tap, and finally a bone-marrow test. They reached a diagnosis on January 13th. I had Burkitt’s Lymphoma. My central nervous system and bone marrow were involved. My bone marrow was more than 80 percent cancer and I was considered Stage 4.

MaryLou: It turned out it was cerebral fluid that was causing the double vision. They transferred him right up into Ellison 14. That night they started chemotherapy. They said Burkitt’s is more common in younger people and in Africa.

Brian: We were told the Magrath Protocol was my best chance of beating the Burkitt’s. The big question was whether I could survive the chemo. They said they had the most success with people under 30 with the Magrath Protocol (of chemotherapy). I was a few months shy of 60. Physically I was in good shape. Mentally I was ready to fight. Dr. David Kuter was my oncologist. Dr. Patrick Hu was my Fellow. What a blessing. I never doubted I had the best care possible. Both doctors have a great sense of humor and that helped me get through the tough days. I’m here today thanks to them.

MaryLou: The doctors explained Burkitt’s is one of the most aggressive forms of cancer. But the good news was that the chemo was most successful on fast growing cancer cells.

Brian: They told us that every 16 hours the cancer cells were doubling. I don’t think I was afraid. I don’t think I ever thought I wasn’t going to get better. Many of my chemo treatments were directly into my spine.

MaryLou: During the treatment he had serious infections, pneumocystic pneumonia, fevers, mouth sores and severe gout. That was a scary time. I thought we were going to lose him. We prayed a lot.

Brian: We have three children, four grandchildren (two had just recently arrived) and a dog named Pepper. Brian Jr. is married with two children and lives only blocks from MGH. This was a good place for MaryLou to crash after some of the long days. Kathy is married with two children and lives in California. Kevin lives in Portland, Oregon, and will marry this summer. Both Kathy and Kevin flew to Boston four times each to be with me and to help MaryLou.

Our kids sent weekly e-mails to our relatives and friends with updates on my progress. This took from MaryLou a large burden of making many phone calls. I didn’t get home very much and when I did, it seemed like I would get sick and end up back in MGH. Pepper was thrilled to see me when I did get home. During the chemo my white blood counts were very low and I was prone to getting sick very easily. Therefore, my visitors were very limited.

Perini, the company I work for, gave me a laptop computer. My son Kevin taught me to use it and I started communicating via e-mail. Perini and my friend Jack Conley held a blood drive for me. More than 60 friends and co-workers donated blood.

The other thing I did to pass time and keep my mind off the pain and fear was listen to books on tape. It was a great way to block out the hospital noises. (We donated the collection of tapes to Ellison 14.) Each time I was admitted to the hospital, we pasted photos of my grandchildren all over the room. That kept me going.

Initially I had a patch over my eye to help with the double vision. We waited every day for improvement in my vision since we knew that would suggest the chemo was working. By June my vision was back to normal. I did a lot of praying. You don’t get much sleep in the hospital. They come in and check your vitals. I used to tell my roommates, “You don’t come here to sleep.” I met a lot of very sick, very brave people during the four months MGH was my home.

MaryLou: His primary nurses were Jill Nelson and Amy Deiulis. We love them. Mass. General sets it up so you have the same primary nurses. There were a lot of great nurses on the floor, but Jill and Amy were special.

Brian: When I go back now I visit the floor and say hello to the nurses. I go now every four months and they do blood work and an exam. During the treatments, my family bought me a beautiful sailboat (a Herrshoff 12 1/2 for you sailors). I had a picture of the boat and would fall asleep dreaming about it.

MaryLou: Brian finished treatments in April and a month after that they repeated the scans, MRI, blood work, spinal tap and bone marrow tests. The wait for the results was nerve-racking.

Brian: The whole family waited with me in Dr. Kuter’s office. Finally, he arrived and quickly communicated the news. The scans and the bone marrow were clear. I was in remission. That was the happiest day of my life! We all shed a lot of tears of joy that day.

I spent from May to September on the Cape, recovering. In May I couldn’t walk the length of the driveway. By September, I was walking miles. I did a lot of sailing with MaryLou and Pepper. After my experience, I knew I had to do something to help others. I set a goal for myself to walk half the Jimmy Fund Marathon in the fall of 1999. I made it – 13.1 miles. This past fall I went the whole way – 26.2 miles.

Each year I hope to celebrate my remission the same way.