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Survivor Interview – Perry R.

Perry is a survivor of cancer of an unknown primary. He discusses sexual dysfunction, changes to his lungs due to chemotherapy, and survivor guilt.

A senior man wearing a blue shirt is interviewed against a white background

I became a cancer survivor in March of 1996 when I was diagnosed with cancer of an unknown primary.

Because I’ve never been sick a day in my life, I never thought I was sick. I got into my office, tried to drink a cup of coffee and it fell out of my hand. I tried to pick up a phone, and it fell out of my hand. A friend of mine, who’s a doctor, called and said, “Get yourself to an emergency room. You sound like you’re having a stroke.” So I drove to the emergency room, not believing him, put one hand over my eye so I could see, because I couldn’t focus. That’s where they discovered the cancer in the lymph nodes of my stomach.

They’re not sure where it came from. They treated me for testicular cancer and did a unilateral orchiectomy. It’s true, it’s a younger person’s cancer, but like my doctor said, “If it walks like a duck, squawks like a duck and acts like a duck, we’re gonna treat it like a duck, whether you’re too old or too young or whatever.” Very honestly, I don’t care, because I feel fine. I have never been sick again.

I had a problem once with guilt of surviving. A nephew of mine who was 30 years old had just gotten married. After their honeymoon, his wife was diagnosed with cancer. She died at 29. He came over to visit me a lot, and I started feeling guilty as to why me, at 56, survived, and somebody who’s just starting out her life would die from such a thing. He says there’s nothing that I should feel guilty about, because he loves me, and he says, “I’m very, very happy that you’re here.” That’s about as guilty as I’ve gotten over it. Other than that, I’m happy as hell that I am here.

I volunteer every Wednesday to talk to all the cancer patients in the hospital. Now and then, I do get a little bit of guilt when I see some of the people who are really sick, or when I see a very young person who is down with this thing. But I know when I talk to them, they’re fine. They open up to me faster than to a doctor or a nurse, because I’ve been there where they are and came out the other side. They really want to know more, and they want to talk about it. It may be good for them, but I get an awful lot out of this.

What was critical was to get me better. Whether I have my sex life afterwards was not a critical issue to the doctors, but I saw in the brochures in the office that there was a possibility that this could happen. I know what I was like before, and I know what I’m like now and, yes, there is a difference. If you have a very good wife, you’re lucky and she understands, you can make things work. I’ve tried Viagra and that doesn’t seem to work. I’m now on to trying Levitra, which is a new one, and there’s a so-called “weekend pill” that is even newer than Levitra. I’m not sure it’s gonna work. But you never give up hope, so you keep trying. You adjust to what you have to do and you do it. In the meantime, I have a very good life with my wife, and she’s happy with me, so it’s fine. We’ve been together for 26 years.

As a caregiver, my wife was phenomenal. She got online. She was reading everything there was to read about the cancer I had. She took notes every single time we went to the hospital. To this day, she doesn’t let me go without her. All I had to do was be sick. She had to do everything else. There should be something done about caregiver cancer survivors. They are a unique group, and they are to be really held in high esteem, if they’re good. I believe I owe my life to my wife. I really do. It’s not a joke.

There was a chemo called Bleomycin, and I had to have seven treatments of it. In the last round, the chemo got into my lungs, unbeknownst to me. We were walking out of the hospital, and I tried to take a breath in, and it felt like somebody had two straps around my chest. I had never felt anything like that. I couldn’t breathe. So I had to go through a whole procedure to get rid of the interstitial lung disease, which is what I got from the Bleo. They didn’t tell me that before, but they said it can happen. I’m fine now. After, I was on three months of Prednisone, working out and doing other stuff, my lungs came back. I think I’m back to where I was.

When I got sick, I was 57. My doctor said to me, “We’re gonna treat you like you’re an 18-year-old.” They really clobbered me. Between treatments, I could walk around, but I couldn’t go out and work and do things like that. At that point, I started saying, “Well, it’s wonderful not working and it’s possible to retire.” I was running a family business with my brother and his son. It’s an old business, 75 years old. My brother, who’s 12 years older than I am, will never retire. I just said, “I don’t want to die in that store.” I made a deal with my brother to work for three more years after I got better, which I did, and I retired two years ago. I sold my part of the business to my brother. When you’re tied down to a store, priority is staying in the store and watching the business, not [watching] children graduating school or going to a basketball game. I wanted to live.

I now work for a friend of mine part-time. We’re making videotapes of the Phen-Fen case, believe it or not. He makes all the video copies of these echocardiograms, and I’m doing that with him. But there’s no stress, there’s no pressure. It’s a pleasure to go in, walk out, and never think about it, which is nice.

Survivorship means opportunity, and it’s given me the chance to do things that I’ve never done before. It’s given me the chance to talk to people legitimately about cancer. It’s given me the chance to see my three grandchildren, go to basketball games, not have to work as hard as I used to have to work, and go on trips or do nothing, which is even just as good. These are experiences. You learn all kinds of different experiences when you survive.

I’m a crazy person, because I don’t believe I’m gonna die until I’m ready to die. When one of my friends out in California came to visit, he got me on the side, and he said, “Perry, weren’t you terrified about the thought of dying?” Truthfully, it didn’t really cross my mind until he asked me about it. I was too busy worrying about living, rather than worrying about dying. I probably was close to it. At least they tell me. I don’t know. I never felt that way. Never.

I don’t think any of us are gonna survive this world, but I believe if you have the right mental attitude, you can extend what some people may not be able to. You have to fight as hard as you can. Even if you lose, you have to fight.

Don’t ever give up. Don’t ever let it get you down. Even if you have to delude yourself somewhat, delude yourself to the point where you can beat this disease. Feel sorry, feel bad, feel sick if you have to, because I sure as hell was sick, but don’t dwell on them. Dwell on getting better. Dwell on fighting the fight. The doctors and nurses, if they’re good, will do their job. But I think the most important person to do the job is the patient themselves, and if you’re lucky enough to have a very good caretaker.

They told my wife I wasn’t gonna make it out of that hospital. I wouldn’t have seen my three grandchildren. I wouldn’t have been doing my volunteer work. I think it’s a wonderful life, worth fighting for, no matter what you have.

My name is Perry Rothaus. I am 65 years old. I am an eight-year survivor of cancer of an unknown primary.

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