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Survivor Interview – Jerry J.

Jerry is a survivor of non-Hodgkin’s lymphoma and prostate cancer. He talks about managing stress, spirituality, sexual dysfunction, and how he dealt with a second cancer.

A middle aged man wearing a newsboy cap and glasses

After I was diagnosed with Stage 3 non-Hodgkin’s lymphoma, I underwent chemotherapy. I went through a clinical trial — five or six different chemotherapies given once a week over a 12-week period in November of ’89. I relapsed in 1990, three days after playing 70 holes of golf in the American Cancer Society’s Longest Day of Golf Fundraiser. So they decided to see if I could get a bone marrow transplant.

After all of it, I’ve had weaknesses and haven’t been real strong. I lost some of the feeling in my hands and feet. I get real cold. My circulation is real poor in my extremities, because of the chemotherapy. I’ve had short-term memory loss. I’ve had high-tone hearing loss. Before I had my transplant, they had to take all my teeth out. And then after my transplant, I had to have jaw reconstructive surgery so that I could wear plates.

I was able to get through college after the transplant, with help through Disabled Student Services, I graduated in 1995.

I was diagnosed with prostate cancer in late ’99. I didn’t want to have to undergo more surgeries, and I’d had enough of all I’d been through. So I waited for a year to see how my PSA levels responded, and then I had 38 radiation treatments. I’ve developed joint pains that now they are telling me comes from the lifetime doses of chemotherapies and the radiation I’ve taken. I’ve just recently found a couple of nutritional supplements that has really made a big difference in me being able to grip golf clubs and play golf again.

After the radiation treatment, I lost what I call my reserve. You know, everybody has a little reserve they can call on every once in a while to make their way past certain times. Right after radiation, I got the flu or a cold or something. It’s taken me about two years to rebuild my system, and I still can’t walk over a mile at a time without just getting real tired. It’s tough to get your muscles worked out when you can’t do the workouts that you need to be able to do. So I’ve been frustrated. And then I was having problems with my job, and I was diagnosed about a year later as being clinically depressed.

Finding a hobby helps — gives you something to hold onto besides what’s going on in your life. I mean, your family is tore apart and they have trouble dealing with what’s going on, and you’re not wanting to burden them, and they’re not wanting to burden you, and it becomes kind of a game of hide and seek. And so, to be able to get out on the golf course for me or, for some ladies, to be able to knit — anything that you can use to get your mind off yourself and your family’s problems is always a help.

After I was diagnosed, I had to go on family leave and then disability, and I’m still having to appeal long-term disability and Social Security disability as we speak, because that’s just the way that you have to fight. It takes so long and there’s so much paperwork to fill out, and they have these people that sit back there and make decisions on your case based on what they know. One of the things that I find I have the most problems with is discrimination because, for a 60-year-old man, I do pretty good. You wouldn’t know that I have had the physical problems I have had by just looking at me. There’s so many different things that happen to each individual cancer patient. You may have the same treatment as the guy next to you, yet two different things will happen to you because of the way that your physical being is at that time.

I have a great family. Their prayers and their love are one of the biggest things I can tell you. When these people pray for me, and when you think positive, wonderful, prayerful thoughts for a person, they all go up to God. It doesn’t have to be to your God, you can be any religion you want to be, but God takes those prayers, those little flickers from all over, and He makes a spotlight of love that’s being shared with Him for us and shines it back down on you. It gives you strength to get through the problem time. When I got cancer, the prayers started coming, and I felt that spotlight of love. I understood for the first time what it really was. I call it walking in the light of love.

After the bone marrow transplant, I was assured that a recurrence of any type of leukemia or lymphoma would not ever be a problem once the bone marrow took back. Fortunately, I was able to give myself my own marrow and didn’t have to go through the graft vs. host problems. But I was very surprised that I got cancer for a second time. I don’t feel that I’ll have to deal with it again. But if I do, another lesson I learned is, no matter what you’re told, you have to get up the next morning. You can’t sit at the end of your path and look and say, “I wonder what’s gonna happen when I go around that corner.” Nothing’s gonna happen when you’re standing at the end of the path. You’ve got to walk the path, and then you find out what happens.

My wife Glenda and I have had an exceptional sex life for many years. I met her in 1977, and we’ve been together about 25 years now. After the bone marrow transplant, we didn’t have any problems with our sexual life, but after I was diagnosed with the prostate cancer we started having the impotence. I still don’t understand it. Viagra didn’t help me. Because we have such a solid relationship, we’ve been able to deal without it for the time being, but we feel like there will be a time here in the near future when it comes back, and we’re able to enjoy it again. But we still cuddle. We still hug. We kiss. We laugh. We do those types of things that help in some way, but I just am not able to get an erection. But, you know, there are ways that you can please each other without actually having to go through complete intercourse. So we use some of those alternative methods.

Survivorship means a chance for life. I’m proud to be a survivor, to have been able to go through what I’ve gone through. And as I have been looking here recently at my life, I’ve accomplished a number of things that I wouldn’t have probably even tried if I hadn’t gone through the cancer. Like, I spoke before the President’s Cancer Panel. I also spoke before Secretary Brown, at the time of the Veterans Affairs system, about bone marrow transplants. Shortly after one of my presentations to him, they added another bone marrow transplant unit for people in the east, because all they had was one in Texas and one in the West Coast. So I don’t know whether I did anything, but I had input. I’ve been blessed. I really have.

My name is Jerry Johnson, and I’m a 14-year cancer survivor.

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