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scottsMy name is Scott. I'm a cancer survivor. I'm 35 years old. I live with my wife Marianne and our three dogs in Portland, Oregon. I first got sick in July of 2001. I've kept a pretty good calendar of events, and it's scary to see how fast this progressed. I saw my general practitioner on July 3rd, and I seemed totally healthy. On July 16th I started experiencing pain in my knees with a little numbness in my jaw. The next day I was flying to the East Coast to begin a three-week vacation at the National Scout Jamboree. By the time I got back East, the pain in my knees was getting


pretty bad. I was glad to know that I had a medical staff right there at my camp, because something was definitely wrong. Over the next several days I was treated by the camp doctors, but the pain medications and antibiotics weren't doing anything. At that point I was often in too much pain to walk. I had fevers up to about 102 degrees, was having sweats, and a lymph node in my neck was swollen. I spent one night in the Army Base hospital. I took more pain medications, and the X-rays didn't show anything. Even blood work didn't clue anybody in. Exhaustive Testing Leads to Diagnosis On July 29th I flew home to Portland. The next day I saw my general practitioner, who took more X-rays and blood work. This time the blood showed something. The following week I had my first CT scan, and my doctor arranged appointments with an oncologist and an infectious disease specialist. The infectious disease was ruled out in one visit with that doctor, and cancer was quickly considered with one visit to the oncologist.Over the next five weeks I had appointments with the oncologist and many tests--MRIs, PET scans, upper and lower GI tests, and a bone marrow biopsy. At this point we knew it was cancer, but we had no diagnosis and no treatment had started. Through these first nine weeks, since the symptoms began, we were in constant contact with my sister-in-law Anne, who happens to be an oncology nurse. She pushed and pushed for answers and got very frustrated that the treatment hadn't begun, and she convinced us that we had to get a second opinion. That's when we went to a new hospital. During week number 10, the lymph node was removed from my neck and biopsied, and on September 24th we met with a second oncologist, a new one. He carefully reviewed the MRI, CT and PET scan results, made phone calls regarding the biopsy, and he even called the first oncologist. He was the one to finally give us a diagnosis. I had stage IV Burkitt lymphoma, an aggressive cancer, rare in adults, which had progressed to my bone marrow. Luckily it responds well to extensive chemotherapy. He offered to treat me, and seeing the dedication and sense of urgency that everyone there had shown, we accepted. I was admitted to the hospital that night and began chemotherapy the next day. Over the next 16 weeks I was admitted to the hospital six times for chemotherapy. Each session lasted five to six days. I also had several infections and complications that put me in the hospital. Part of my treatment included having intrathecal injections and chemotherapy into my spine, but working through all that, I guess I just put up with it. I didn't really deal with the pain too well, I guess, but obviously I was sick and I didn't feel well. But there were good times in the hospital as well. One of the nice ones was that I got a surprise visitor. My oncologist brought in one of his star patients that was Lance Armstrong. So I got to meet him one morning, and that certainly was a high point. At the end of December 2001, I had completed all of my chemo protocol, and there was no sign of cancer. Now I moved to the next step, and on January 10th and 11th my stem cells were harvested for an upcoming stem cell transplant. On July 28th I went back into the hospital for the stem cell transplant. Twenty-six days later I came home. Taking the Experience Day by Day Through all of this, over 80 days in the hospital, I felt kind of numb. I seemed to block out most of what was going on. I guess I forgot about yesterday and didn't worry about tomorrow. I just concentrated on what was happening at the time. Unfortunately, this left all the worrying to Marianne. We got so much support from our families. My parents drove up from California at least once a month, and Marianne's three sisters all visited, sometimes for a week or more. It's just amazing how weak I got. The treatment really does wipe you out. I never thought I would die, or maybe I never thought about that. The one thing that scared me the most was how much weight I lost. At one point, I was down 60 pounds. Then after the treatment was done and I was feeling pretty well, I still couldn't gain any weight. The nutritionist helped identify how many calories I needed, and I guess that worked. I still have about 10 to 15 pounds to go, but at least I feel pretty healthy. Today is day plus 198 since the stem cell transplant. I'm feeling stronger each day, though I still get tired. On July 1st this year, I was able to go back to work. I'm working part-time and I feel pretty much like a normal person again. It's been quite a year. I guess I kept a good attitude through it all, and I kept a good mental outlook. I'm feeling well and looking forward to the next 35 years of my life. I'm involved with the Boy Scouts again, and after my one-year anniversary, I hope to volunteer at the hospital as a bone marrow transplant buddy for others who are going through this challenge. Having Marianne by my side throughout all of this experience made such a difference. She was at the hospital every day. Looking back on it shows me what a difference and what a demanding and important role a caregiver plays. The support that friends and family gave was huge, too. All of my buddies from high school made the trip up from California to see me in the hospital, and that was a big boost. Now I'm just looking forward. Like today, I'm able to talk about my experience, but I don't dwell on it. It's something I've been through and something I take day by day. That's about it.

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