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Survivor Interview – Karen S.

Karen is a sarcoma survivor. She talks about managing lymphedema, changes to her lungs, and telling others that she is a survivor.

A middle-aged woman with short curly hair wearing a black shirt is interviewed against a white background.

I became a survivor in 1980 when I was first diagnosed with a sarcoma.

I was diagnosed my junior year of college. I had just turned 20. Being in college, it was a difficult time. For many years, I was in denial with it. It makes it hard to be in denial with something, and then have a recurrence a few years later. That’s when it really, really hit me how serious things were. I have had no recurrences since 1983, which is over 20 years.

In 1986, I developed a chronic infection from the surgery that they had done in 1983. It lasted two-and-a-half years. The cancer surgeries were about a dozen, and the infection and cure of that were about another dozen. It was a long road for about ten years, throughout my 20’s. It taught me a great deal about patience. I was pretty determined not to die from an infection. I thought, “I’ve had two bouts with cancer, I’m not gonna die from this infection,” so I was pretty adamant that I wanted to live. There were a lot of lengthy hospitalizations. I had some occupational therapy to my shoulder, but 40 and 50 days in the hospital was not my thing. That made it very difficult on an emotional level. Getting through that, I think I’m more proud of that than anything.

The tumor was on my collarbone. When I had the recurrence, they had to take out my pectoral muscle and basically rebuild the right side of my chest wall, removing ribs, and the lung was affected. What they did in order to rebuild the chest wall was put in a Marlex, which is something you see on the bottom of a boat. It’s what they used 20 years ago, and that’s what got infected. My body rejected it two years after the surgery in 1983. The upper part of the lung was damaged from the radiation, but this mesh had adhered to my lung. The infection was so difficult to cure, because they had to take the mesh, which had become part of the lung. It was a big ordeal in trying to get it out and trying to save as much of the lung as they could. They did save quite a bit of it. But it’s not what it could be. Considering what I went through, it’s doing pretty well. In terms of my capacity, it’s very good. They only had to take out very little of it. As far as my breathing and other things, it’s not a real big issue for me at all.

I have a pretty severe case of lymphedema in my right arm. It’s a combination of the radiation and the fact that they had gone in that same area 20-plus times. That’s probably one of the things that I think, on a day-to-day basis, I get more frustrated with. Depending on the time of season, heat really affects it and it blows up more. I have to be very conscientious to wear a sleeve when I travel. I’m very susceptible to infections because of the swelling, and the fact that I don’t have a good blood flow there. If I get cuts, it can turn into a strep infection. I’ve had two of them, one very severe, where the arm just blows up and it’s as hard as a rock. You have to go in the hospital for a week of antibiotic therapy, and it’s not a fun place to be.

When I was in college, I played on the tennis team. Unfortunately, I was right-handed, and that’s where all my surgery is done. I tried to get back into it, not on the competitive level, because after that kind of surgery, radiation and stuff, it really takes a toll. That’s how I got into biking. I was trying to look at some outlets to have physical activity and competition, and I got into cycling. It was through the Pan-Mass Challenge. I did it in 1986. I’ve done it since then over the last twenty years. It’s a nice way to give back. It’s a nice way to get out there and train. In 1992, while I was working at Special Olympics, they had a crew from Seattle come to the check presentation at Dana-Farber. They run an event called the West Coast International Bicycle Challenge. It’s 1,700 miles over 30 days. I participated, and I finished. It was amazing. We started in Seattle, went to Victoria, and then ended up in Tijuana just over the border. I think going through something like this, you do have a sense of life is a precious gift, and there’s no guarantees about tomorrow. As a result, sometimes I’ve made some bold decisions and taken some good risks.

When I was going through this, therapy would have probably been a very normal course of action, but I think when you’re in denial about something, what is there to talk about? I was in that state for a number of years. Sometimes denial can be a good thing, but it might be good to talk with somebody. I went and saw somebody about it, and she actually diagnosed it as post traumatic stress disorder. I think it means that you’ve gone through a traumatic experience and there’s been a delay in your reaction, in terms of your emotional side catching up to it. You have to go through something difficult, you do what you need to do to get through it, and then there’s a time when you accept it, and you might need to process it, and then that’s a good thing.

I was very, very happy that that happened, because it forced me to really look at what happened. It’s what got me into being able to say the word ’cancer’ and being able to talk about it. I’m very outgoing and social. I’ve got a great family, but it was an area of my life that I didn’t want to share with people. I support people today. It’s just wonderful how young people talk about it and older people talk about it. It’s not the taboo that it was 20 years ago when I was diagnosed. It was pretty lonely. You almost felt like you couldn’t talk about it, because people would assume it’s a death sentence. People would treat you different. It’s not that they meant to, but it’s just human nature. I’m glad that things have shifted. Other than the fact that I had a lot to get through, I think our society has changed in terms of its perception. We are survivors, and people do make it from having had cancer and go on to live very happy and fulfilling lives.

When I had to have the 18-hour procedure, I remember saying to my doctor, “When this is all over, we’ll have to celebrate.” He said, “Yeah, we will.” Literally five years later, I called him. I said, “So when are we having my party?” I thought we’d have a little cake and whatever at the clinic where I’d been going for years. He planned this big elaborate cocktail party in my honor. It was really neat, because my family and very close friends were invited, but the majority of the people were the people who cared for me over that ten-year period. It was a wonderful thing. You go through something difficult like this, but you can’t forget the people that help you.

I have mixed feelings about the word survivorship. I’m proud to be a survivor, but on the same note, it’s also hard to put that out there. My reluctance, initially, was to share what I’d gone through and to be open about it. I am proud of it, but I still think there is this element that I don’t share with everyone. It’s a positive word on some levels, but I have a certain impression of it. I’m happy to be a survivor, but I know that there are others that aren’t. Maybe it’s just feeling guilty a little bit. I know a lot of people that have not made it. I went to a Survivors’ Weekend in Connecticut at the Hole in the Wall Camp. It was the first time that I ever really talked to other cancer survivors. What was really moving for me and really shocking was how many people didn’t make it from the time period I was sick. There were only three of us from the 80’s. It gives you the chills. It was nice to see that there were so many people from the 90’s. I went into a study a number of years ago after I was sick, because sarcoma is rare and doesn’t have a good survivorship. I wanted to see where we are with it. It was pretty frightening to know they had to cancel it because not enough people survived. That puts things in perspective. Because of that, I have such mixed feelings about the word, because I am and others are not.

I’m Karen Stevens. I’m 43 years old, and I am a 24-year cancer survivor.

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