From BMT Newsletter March 1995 Issue # 28 - BMTs for Chronic Myelogeneous Leukemia Reprinted by NYSERNet with Permission from BMT Newsletter
It's been more than two years since my bone marrow transplant for Chronic Myelogenous Leukemia (CML) and I'm just now starting to gain some perspective on its repercussions on my life. I've wanted and needed to write about it for some time to help me sort it out. One thing's for sure-catastrophic illness is tremendously invasive and pervasive. It touches every facet of one's existence both in the short- and long-term. Though it may seem hard to believe, there are even some positive aspects of the experience.
I still find it almost bizarre that I would be the one to get so sick. I was very physically active. I rode my bike 2,000 miles a year, swam about 100 miles and was active in my children's lives. Leukemia happens to people you read about in the newspaper during their appeals for donors or money for transplants. It doesn't strike enormously healthy, happy and vital 39-year-old family men.
I had been having trouble with my hip. It was very stiff and painful and was absolute hell on my golf game! I was due for my biennial company physical and a colleague was going in for his, so I made an appointment with his doctor. I went in, he walked me through the paces and I then went on the road for a few days. When I got back, I found messages from the doctor waiting for me all over town. He told me I needed to repeat the blood test. I didn't think much of it until I saw his nurse running my blood sample over to the hospital across the street for testing. He told me that my white cell count was significantly elevated and suggested that I see a hematologist.
There never was any "cataclysmic moment" when I discovered I had leukemia. I knew, early on, that leukemia was suspected. The genetic confirmation was almost an anticlimax. My wife, Karen, and I decided to be up-front with our boys, so we told them that night. The fact that my 11-year-old son's appendix ruptured exactly at the moment we told them only makes the day more memorable. Gannon only paused from his pain long enough to ask me if he was going to lose his Dad. I told him I didn't think so, and after he decided I was telling the truth, he went right back to clutching his stomach and groaning. At that moment, I learned something about unqualified love and acceptance. Our 14-year-old, Donovan, really didn't say much. Still waters run pretty deep with Don, and I was a little concerned about how he would deal with this.
I mentioned there are some silver linings to this particular cloud. The best for me was the response by our two boys. They dealt with the situation in their own way and each contributed greatly to my recovery in different ways. Gannon is a real live wire. His natural enthusiasm for life energized me whenever I got to see him. Gannon's story was and is about unqualified love and support, which is exactly what recovering cancer patients need.
Our older son, Donovan, is a big strong kid. Now 16, at 6'4" and 210 football-playing pounds, I never felt more secure than when he had a hold of me. He never hesitated to pitch in, even for an instant. He was a rock for both Karen and me. I think my illness robbed him of some of the innocence of youth, for which I am truly sorry. If I die tomorrow, I know he will grow up to be a good man because I've already seen that he is.
Karen and I have been married for 18 years. The vows read "in sickness and in health," but I'm not sure the author had this kind of sickness in mind. I have a lot of respect for Karen and her strength. Over the years I've come to expect a lot from her, and she has never let me down. Karen really, really persevered and I wouldn't have survived if it weren't for her. It never occurred to me that Karen wouldn't be there for me, which was probably unfair.
I have three brothers and two sisters. Fortunately, my younger brother, Bill, was a perfect 6 out of 6 antigen match. I had the BMT in April 1992. From then until March 1993, I was in the hospital on seven different occasions, including the initial five-week stay. The remaining six were related to GVH and at one point, I was in for about three months.
Though I still deal with some GVH, my family considers my leukemia a thing of the past, which is good. I'm not quite ready to give it up until I'm sure I've wrung everything I can out of the experience. Catastrophic illness and recovery offers a unique perspective on life that is too precious to waste. It's a physical and emotional roller coaster and I want and need to understand what it's done to me and how it's changed me.
I talk to as many patients as possible because cancer is very isolating. Although each person's cancer experience is different, it's important to know that one needn't go through it alone. It's a pretty exclusive fraternity, even if I don't wish membership on anyone.
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