Survivor Interview – Len S.

I became a survivor in April 2002. I had a diagnosis of kidney cancer.

I had a heart stent put in about early April. Not too long after that, I had these horrific pains in my back like somebody was sticking a knife in there. I ignored it for a while, as usual. Finally, I had to go to the hospital. The doctor examined me and said my right kidney was sore. That’s not where I felt the pain, and she said they were going to do a CT scan of the area. They were looking for kidney stones. About a half-hour later, she came back and said, “Good news and bad news. You don’t have kidney stones but there’s a mass on your kidney.” I just knew what it was. There was no need to tell me. I didn’t say a word. I was shocked. It had moved from my kidney into my lymph system, and I had a tumor along my spine. Once it hit my lymph system, it just went throughout my whole body.

In May, I had my right kidney removed, and they also took the tumor. That laid me up for three months. I get scans every three months, so I was fine up until I got scanned prior to Christmas. He told me that I had cancer in my lymph nodes, which were squeezing around my aorta, and in my kidney. I have a rarer form of kidney cancer. It’s a capillary subtype. It’s slower to grow, but it’s harder to treat. I went on a drug trial. I was on that for forty-two weeks, and that was pretty nasty. I failed the first clinical trial.

I talked to my doctor in Portland, and there was promising clinical trial that I wanted to get on. But the drug company turned me down because I have a rare form of kidney cancer. They didn’t want to take me on because it’s hard to treat, and they needed to get their numbers. That’s the way it is. They left me with one other option, and I wasn’t going to do that. It would’ve put me through hell again and at best, it was temporary. I told him, “No. I’m not going to do this no more. Now what does that leave me? Do I go home and die?” He didn’t say a word to me. There was nothing to say. So I made an appointment with a doctor in Houston. Now I’m on a second drug trial. So far, I’m stable. I’m not sure how it’s going to work. My life goes every three months. If this doesn’t work, I’m in for another hard ride.

I’m fairly healthy. I don’t get sick a lot with colds or flu. When I was on the first drug trial, it was like having an extremely bad flu for forty-two weeks and that really beat my immune system down but it’s coming back. I don’t get sick often, but when I do, it hangs around. I try to keep my immune system up because the best way to fight kidney cancer is have your immune system fight it off. If I have to fight cancer, I need to be strong to do it. One thing I try to do is be outside, hike. I like outdoor photography, so that gets me out. I go to a gym quite a bit, just to keep myself strong. I have a lot of limits now. I can’t push myself, so I keep within my limits. I need to fight it from a position of keeping my physical health strong. I don’t eat as well as I should, and I keep on saying, “I’ll start it tomorrow.” But I still try to stay away from junk food.

My daughter is 19, and she goes to college. She wants to get her doctorate in microbiology. She wants to do cancer research. My son is 15, and he wants to be a chef. He’s pretty good too. They don’t talk to me much about the cancer. They know what’s going on. They know exactly where I stand. I don’t keep anything from them; good, bad, whatever. Whatever the results are, they know. I’ve told Nicki that no matter what happens to me, she still needs to have her life and go to school. Gerry, for 15, he’s really perceptive. He knows what’s going on. In fact, he knows more than he lets on. I assume that it’s pretty hard for them. I have to prepare for life and death. My daughter was home for summer vacation, and we had to sit down and say, “If I die, this is what’s going to happen.” They’re the only two people I have anything to divvy up. I don’t have much to divvy up; just a house. I sat down and told them, “Don’t fight about anything. Just be cool. You’ll get this, and you’ll get that and do what you want.” I guess it was hard for them.

Dating is really hard for me. When I started all this, I had to put a lot of things away. I turned a lot of my feelings off. I had to. I started out as a poor, single father. Now I am a poor, single father with cancer. To me, dating or anything like that, it’s just not in the books. There’s nothing on the table anymore. I went into a survival mode, so I turned almost all my emotions off except for my kids. It’s really hard to start anything with anybody. You meet somebody, now it’s like, “Do you want to go out for a dinner? Oh by the way, you buy, because I can’t afford it.” Who knows what’s going to happen to me six months down the line? I don’t really want to get anybody into that. I’ve seen cancer. It’s overwhelming.

I used to be financially devastated. I’m well past that point. The finances are gone. They’ve long been gone. The devastation that cancer does financially is just overwhelming. You’re talking thousands of dollars for just a couple of pills sometimes. Literally. One of the treatments they want to put me on now, there were three drugs to this treatment. One of the drugs for one month was $5,500. My COBRA ran out, so I have to pick up my own medical insurance. I have to fly to Texas. If it wasn’t for Mr. MasterCard, I’d be dead. But that’s done. I can’t do this anymore. It has literally come down to either feed my son or do the treatment; go fight the cancer. There’s no question here. My son comes first. I have to pay my insurance. It costs me $581 a month. You get the bills and it’s like, “Where the hell am I going to get this?” I don’t know where it’s coming from.

I go to Texas every month. I’ve gotten help, right out of the blue for the last few times to go to Texas. Southwest Airlines gave me two free tickets. They know I have to go every month. The month before that, I told them, “I’m not going to be here next month. I can’t do it. There’s no way I can be here.” They’re telling me, “You have to be here.” It’s like, “I have to, but it’s not going to work.” But Southwest Airlines came through last month, which was pretty cool. Thank you. But that’s just that month. Then this month came up, and it’s the same thing. “I can’t go down here.” I got help again from the people I work for. They bought me a ticket to Texas. But this is an ongoing thing. My financial abilities are devastated. There’s nothing there to tap into. The way it’s working out is the farther I get along, the more I’m being hammered financially. It’s getting harder and harder.

I’m on Social Security disability. I’m in a financial hole that’s bottomless. I’m so used to doing it all by myself, figuring it out and getting it done. I realized a long time ago, that it’s impossible. It’s impossible for me to be like this anymore. I made a decision to either go back to school or find something different to do that’s not as physically demanding. Or both. I have to keep on going. No matter how I feel, no matter what, I’ve just got to keep on. Going forward. If I lay back and let it kill me, it will. I’m not going to do that.

It’s a different world for cancer patients. You’ve got so many things on your mind, and you’re sick. You have to deal with doctors. You have to deal with everything. But then you have to deal with the everyday stuff too. So you’re actually living two lives. I live strong by doing what I need to do. I have to raise my son. I need to keep on doing the normal things. I get out. I like to be on the move. It keeps me going. I try to be physically strong.

My name is Len Sulvetta, and I’m a two-year kidney cancer survivor.