September 24, 2015 | By Michael C. Neubauer, as told to Megan Herndon
It was April 1983 and I was a third-year law student at the University of Illinois. I was playing intramural basketball and kept getting big, ugly bruises that lasted for weeks. My shaving cuts weren’t healing and I was feeling this full sensation in the left side of my stomach (my spleen). I knew my dad had diabetes and I knew diabetics could have blood platelet abnormalities, so I went to my doctor thinking that might be the problem.
“The good news is you don’t have diabetes,” my doctor told me. “The bad news is I think you have chronic myeloid leukemia.”
I was 24 years old. He gave me three years to live. I asked him if I should bother taking the bar examination. No answer.
I knew that if I didn’t get a bone marrow transplant, I was a dead man. That was very difficult to confront. I was terrified; I was waking up in the middle of the night. I was depressed and I was resentful of other people.
I had the disease for barely two months when I found out my sister was an HLA match, which meant she could be my bone marrow donor. Then, I actually had hope, with about a 50 percent chance of survival. Fred Hutchinson Cancer Research Center was one of the few hospitals in the U.S. that was doing bone marrow transplants at that time, and my doctor said it would be the best place for the treatment.
I took the bar exam, worked at my law firm for a month, and then packed my suitcase for a two-week trip to Europe before heading to Seattle for treatment.
The last stop on that trip was Rome. As a devout Catholic, I was pleased to have the chance to see the Vatican and be part of an audience with Pope John Paul II. I remember being in a crowd of 60,000 people and our group was the last one in the piazza. I was thinking, “What are we still doing here? He’s not going to come over here.” But he did. He came down to my row, put his hand on my head and I kissed his ring. I said, “Father, I’m dying.” He looked at me and said, “You will be alright.”
Then, I left Europe and headed to Fred Hutch with my mother, Corene (now deceased), and my donor and sister, Dawn, to whom I owe my life.
Frankly, the BMT was brutal, and I had it easy compared to some other patients. They gave me Cytoxan (a chemotherapy drug), total body irradiation, and the transplant. I had terrible headaches, constant nausea, and I couldn’t eat for 35 days. I’m 6-foot-5 and I fell to 160 pounds. I became sterile and my hair came back black and wavy (eventually going back to normal). I was lucky and had a routine experience, especially given that other patients on my floor were dying. Through a very horrible time in my life, the Hutch staff was just outstanding. I have nothing but compliments for the medical services provided and the strong attention to detail.
I returned to my hometown, Chicago, after my transplant and, in 1987, I married a wonderful woman. We were undergrads at the same time at Northwestern University; both attended law school at the University of Illinois and met while working at the same law firm. We adopted our first son in 1990 and three more children over the next eight years.
In 1998, the same year we adopted my daughter, I got a call from a friend who had a transplant the same time I did. His name was Percy Randle, a good ol' boy from Mississippi and a fine man. After his transplant, he became a chaplain at Fred Hutch where he’d been working for over a decade. He suggested I get myself checked for hepatitis C, which is transmitted through blood transfusions and was common among transplant patients at that time. Percy’s reason for mentioning this: He had hepatitis C. It would eventually take his life.
Percy was right; blood tests indicated that I, too, had hepatitis C, which wasn’t known to exist at the time of my transplant. In spring of 1999, doctors tried treating that with interferon treatments at a hospital in Chicago. But after two weeks, the therapy caused unbearable neuropathy, so I couldn’t continue.
The medical staff decided to start that treatment again in 2000. But there was one hitch: It turned out my doctor had forgotten to administer one diagnostic test for that virus. Although earlier tests confirmed hepatitis C, my doctor said he couldn’t continue the interferon therapy until he gave me the missed test.
Before that exam, I went to visit my mother-in-law, Carol Craigmile, who gave me a swath of cotton that had been blessed as a cure for the sick by Padre Pio, now a saint in the Catholic Church. She said, “Take the cotton, say some prayers and go in for the test.”
A week later, that test came back negative for the virus. My gastroenterologist didn’t think much of this result and told me to take it again. It came back negative a second time. Two months later, I went through a full battery of tests and they all were negative for hepatitis C. Call it a religious miracle, or call it what you will, but the fact remains: medical tests showed I had hepatitis C one day, but I didn’t the next day. My doc still shakes his head.
I’m happy to say the leukemia has been gone for 32 years come this October — and the hepatitis C for 15.
I’m the only BMT survivor I know. There were 50 people in my “transplant class” in ’82 and ’83 at the Hutch. The docs there told me that as of 2005, only 18 of us were still alive. To have lived this long, I truly beat the odds. I’m a very lucky man.
My advice to anyone who has been diagnosed with leukemia is: If you’re eligible for the transplant, get it. My faith gave me hope. Cancer gave me a greater sense of perception and proportion and showed me the need for balance in my life.
There are some days when I’m sitting in my corner office, looking out the window from the 19th floor thinking, “Jeez, I’m still alive.” I’ve got a wife and four children; I’m making pretty good bread. I don’t know why I’m not dead but I’m damned grateful.