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sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Type of Sarcoma: Osteogenic Sarcoma
Diagnosis: 1986, 30 Years Cancer Free and Counting
Location: Leg, Brain
I was born and raised in Grand Rapids, MN, and like a lot of kids up there I loved playing outdoors, playing sports, fishing, hunting, etc. Some of the best times were going up to Canada camping on a lake and catching and eating fish all day long. During my second year at Itasca Community College in Grand Rapids, my left leg started hurting even when I was just walking. I had cortisone shots, physical therapy, and chiropractic work done, but nothing worked for very long. In the spring quarter of 1986, I enrolled at the U of M at Minneapolis. I was excited to be in a dorm, meet people from all over the world and be on the big campus. My left leg kept hurting.
On the third day of school, I went to the campus health service and mentioned the pain that I had. They took an X-ray and found a tumor on my left fibula. They scheduled me to have a biopsy of it the next day. I called my parents and mentioned this. They came down and met me in the old hospital on Thursday, April 3, 1986. The doctors took a biopsy of the tumor. Eventually the doctors came in and told us that it was malignant and that I had a hairline fracture on the fibula. It was a fast growing bone cancer called Osteogenic Sarcoma.
My parents and I were in shock. They took it harder than I did. I was worried about having to quit school. The doctors went over what was going to happen to treat the cancer. My main oncologist was Dr. Marie Steiner. She really helped me get through everything! She said the orthopedic surgeon would be Dr. Roby Thompson who specialized in the cancer and surgeries similar to what I would be going through and that he was the best in the nation. That made me (and I am sure my parents) feel a lot better. I had a catheter put in my chest where they would give me chemotherapy and other liquids. Fortunately, I was able to stay in school and live in the dorms. I was lucky that the dorm I stayed at was just across the street from the old hospital. I was on crutches because of the fracture on the fibula. That made life even more difficult getting around the huge campus, in warm to hot weather carrying a backpack full of books and going up and down countless steps every day.
The dorm staff and students there were great! Because I was always on crutches, many of the students were curious and asked me. When I told them I had cancer, they were really nice and supportive and offered to help if I needed. I sat and talked with many of them. It really helped! I also needed help getting my food in the cafeteria carried to the table where I ate, so the food service had someone help me. One day one of the best looking women working there helped me. The guys I went down to eat with were so jealous!
My parents came down from Grand Rapids every time I went in for chemotherapy. They were so supportive! I could not have gone through the treatments and stay in school without them! I was pretty nervous going in for my first chemotherapy treatment. I walked into the old hospital for my first treatment. I went into a room for four that shared a bathroom with another room of four. There were seven young kids all under the age of 10. Many were in there for months at a time. I started to cry for them and knew then that I would beat this cancer. Amazingly, two of the kids were from Grand Rapids. Their parents were very helpful for me and my parents.
My first treatment did not go well. I had a reaction to the chemo drug that the doctors had never seen. They decided to give it to me again for my second treatment and gave me some steroids (no my muscles did not get bigger), but I still had the reaction. My hair started falling out like crazy, and I shaved it down. I had not gotten very sick from the first two chemo treatments. The next treatment I got was an outpatient treatment in the oncology clinic. I went to a class and was fine until there was about 45 minutes left. I really tried to stay to the end. Eventually I had to leave and get to the bathroom quick. After a while, I made it back to the clinic.
They put me in the hospital and gave me some fluids and a different anti-nausea drug (Ativan). That worked, or so I thought. I was still vomiting but had no idea that I was. For the rest of my chemo treatments I was in the hospital getting the new anti-nausea drug. During one of those treatments, I got a great surprise. We were all being moved into the new hospital! They were all one- or two-bedroom rooms and we had our own bathroom and TV!
During the few times when the effects from the chemo were tough, I remembered all the fun times I had with family and friends – at the cabin, playing with neighborhood kids after school, fishing in Canada, going to movies and hanging out with friends, deer hunting, and great home cooking and favorite restaurants! I also thought about doing as many of those things as possible when I got better. The chemo killed the tumor and I had it removed two days after my last final. Many family and friends visited me in the hospital after the surgery.
They also removed part of the fibula obviously and part of the nerve that allows you to raise your foot. The fibula is a non weight-bearing bone and is used to stabilize the ankle. There was no need to fill in the missing space. They took a nerve from my foot and grafted it in, but it did not work. I have a drop foot and wear a brace on my leg to keep my foot flat when I walk. After the surgery, I went back up to Grand Rapids. It was great to get back home! I had not seen my two younger brothers since I went down in March. They were pretty happy to see me! I had more treatments in the summer and when I went back to school through December. I was very happy when that was over. The worst side effect was having cold sores in my throat. At times it was so painful I could not swallow without pain. Look for treatments that have “dichlonine.” My hair started coming back along with my strength and endurance.
In the summer of 1987, I noticed my right hand and arm twitching. When I got down to the U of M for school it got worse. I went to the Twins and Detroit playoff games with some friends from the dorm. I called Dr. Steiner, and they scheduled some tests. They showed what I had feared. It was back (and it was not Arnold). It was the same type of cancer attached to the inside left part of my brain. Even though I had a pretty good idea what it was, I was devastated when it was confirmed. I went back to my dorm room and put on one of my favorite music CDs and cried. Then I went to lunch in the dorm and told a couple of my best friends there that I had cancer again and would have the surgery the next day. Once again my parents came down and many of my friends came before and after the surgery. Of course some of the tests were different types of scans of the brain. I was able to tell my dad, “One of your wishes finally came true – I got my head examined!” It was an even better joke after they removed the tumor. Then I could say, “They did not find anything.”
I was also mad because I thought I was going to miss seeing the Twins in the World Series. Dr. Steiner talked to Mark Rosen and he got Kent Hrbek and Tim Laudner to call me during the time I was in the hospital recovering! I could not believe it! When I got out, one of the people I gave tickets to for the Twins and Detroit games gave me tickets to games six and seven of the World Series. What great therapy!
I had the maximum amount of radiation to my brain that they could give me through December. The doctors and nurses were terrific! Many of the nurses were close to my age. Some would meet me for lunch or dinner around the campus. Soon after that Dr. Steiner said she had to go on another assignment out East. I could not believe it and was crushed. How could she leave me now (and all her other patients)? I was still going through tests and still had about seven years to go to reach the magical 10 years. She had become such a big part of my life during the last two and a half years. She found a great replacement for me to see – Dr. Joe Neglia. He did a great job helping me.
After a couple of years, Dr. Roby Thompson said that I will not have to keep meeting with him and the other doctors and not have the expensive tests done anymore. He said when the tumor re-occurs in the brain like mine did, patients do not usually live as long as I had. Needless to say I was ecstatic! I flew out of the clinic to where I was living and called my parents with the great news! They were pretty happy, too.
The last few years I occasionally thought about when this all started. Last spring I knew it was the 20th anniversary of the start of it all. On April 3, 2006, I called Dr. Steiner (who had returned to the U of M) to say “Hi” and mention that it was 20 years ago that I was originally diagnosed. She was very happy to hear that and that I was doing well. When I was first diagnosed, I was going to research and find out everything I could about Osteogenic Sarcoma.
As I focused on school, the treatments, and enjoying life, that thought faded away. I never thought of having cancer as a problem. It was just a new part of my life. Never, at any time, did I think I was not going to beat cancer. I was very fortunate to have had the great support of my parents, brothers, and other family and friends. All the doctors and staff at the U of M had a part, too.
I strongly believe talking to so many people, many of whom were complete strangers and then became friends, was very beneficial to me as I went through the treatments and after. Always stay optimistic and believe that you will make it. Talk to people about what you are going through. Remember the fun things you did and accomplished – and people you did them with.
There are a lot of caring people in this world who will listen and help you. You can call me if you would like to talk about my experiences or if you want to talk about yours. Please join me and the other volunteers to help this great foundation continue to bring people together affected by Sarcoma cancers and continue education and research to cure them.