Interview with Bill Casey By Allison Casey Anatomy P:6 When did you first get the feeling

that there might have been something wrong? - 1994. I was tired all the time; I had a sore throat all the time. I played hockey, and I kept thinking that I needed to work harder because I just couldn't stay in shape. I sweat every night in bed, and I always just felt like there was something wrong. I had all sorts of pain in my abdomen too, but no one could tell me what it was. I got cramps in my legs when I walked up hills, and I had a skin infection on my foot. How did you find out that you had it? Two years before I was diagnosed, I was already complaining to people that Ididn't feel right, but everyone told me that I was just being a hypochondriac. No one believed me, so I didn't end up going to the doctors for a year. I also had a fungal infection on my foot, so I eventually went to the doctors for that, but before he gave me the pills, he said that he needed to check my blood count to see if everything was okay. On a Friday night I was sitting at the kitchen table when I got a call telling me not to take the pills because I was anemic. He said that I needed to go back in to get my blood retested. On Monday morning I went to work (I was working at the Mass General as a nurse) and filled out a lab slip, and then I went to the lab and they redrew my blood. What did the results from the lab say? The lab said that my white count was one. I felt like my heart stopped; I thought I was anemic with red blood cells, not white. I knew this had to be bad. I printed out my lab work, and I didnt have one value that was normal. I showed it to my boss, an oncology nurse, and she said is this patient having chemotherapy? I said no, thats me. She told me to go to a hematologist right away. I brought the lab slips upstairs and gave it to the hematologists secretary. A while later she called and said that the hematologist wanted to know whos blood work it was that I had given her, and I told her it was mine. I heard the hematologist yell in the background, Tell him to come up here! I went up to see him, and he told me that I had leukemia. I went back downstairs and my boss asked me what was wrong, and I told her I had leukemia and left. I didnt know what kind of leukemia I had. When I drove home from work that day, I assumed Id be dead in three months dead at 39 years old. What happened after that? - I had to go back and have a bone marrow biopsy, which was incredibly painful. The needle goes right into your pelvis bone its called a trephine actually. Theres a tube and a needle that goes into it, and they suck out the bone marrow through the tube. Usually it takes 15 minutes, but mine took an hour. You mother had to leave the room after awhile because they basically have to drill the thing through you and it was very painful. It felt like a screwdriver was going through my bone. Usually its supposed to look a little like blood, but mine almost looked like wax. My bone marrow was barely functioning; in fact,

the doctor thought that I had bone marrow failure. The diagnosis that I had hairy cell leukemia was confirmed. They were afraid to give me chemotherapy at first because they thought it would kill me. Eventually they thought that it was the best thing for me, and that I would probably be okay. This kind of leukemia destroys your immune system. Theres a part of your white blood cell count called the absolute neutrophil count, and its supposed to be about 2500 at normal. Mine was 500, which is considered critically low, and youre at risk to catching infections that your body is unable to fight off. I was working in a hospital at the time, so I became very afraid to go to work, and very paranoid that I was going to catch something bad. I was diagnosed in September, and given chemo by December. Hairy cell leukemia is extremely rare, and I asked a hematologist I went to how many cases of HCL he had seen, and he told me he had never seen one before. The reason my stomach was hurting so much was because my spleen was the size of a football. If someone had hit me too hard in that area while I was playing hockey, I couldve bled to death. Can you tell me about your chemotherapy? - It wasnt really that bad. I was in the hospital for almost two weeks and got a constant dose of it; I couldnt eat; all I could eat were Fritos, which is kinda weird but it was something. The chemo drug they gave me was called cladribine, which isnt like the normal chemotherapy drug. This drug only targets the bad blood cells, and it was designed for the kind of cancer that I had. I didnt lose my hair or anything. Before this drug, there was no treatment for HCL. Everyday my temperature would go up to 103, and I would have the shakes. Every night I would sweat and my whole bed would be soaked. That was the hairy cells dying. I also had a horrible rash; a lot of people who have that drug get tend to get rashes. When I came home I had to give myself shots of neupogen everyday, which stimulates your body to make white blood cells. I was on three different antibiotics while in the hospital, which is why I was there for so long. I went though chemo for seven days. I wore a mask to protect myself from sickness because I was immunocompromised, but other people thought I was wearing it because I had something contagious or something. It was actually kind of funny; your mother and I could clear whole corners in the waiting rooms because people were afraid I was going to give them something. I would walk out to this glass corridor that connects two buildings and Id sit there and look at the view of Boston and listen to my walkman. I listened to the song Glycerine by Bush a lot, as well as some Nirvana and Pearl Jam. Most people after theyre treated can expect about 8-12 years of remission after theyre treated. Im at sixteen years right now, and my last blood cells were normal and I havent relapsed. Its a disease with no cure, but long remission. I was really weak when I came home; it took me a few months to get back to normal. By the time March came around, I was playing hockey again but I lost my job because I had been out so much. I took a different job in the hospital in the operating room. I read new studies that it can be caused by the sun, by a B-raf mutation. People that get skin cancer also have B-raf mutations. But they dont really know what causes HCL. I used to wonder how I got it, why I got it, but now I dont really care. I just got it, thats it. Do you think yours could ever come back?

- It could. But Ill just get it treated again. I still think about it every day. Who wouldnt? Its incurable, so theres always a chance it could come back. You were so young when I got it; I didnt want to relapse and end up having something happen to me before I got to see you grow up.