In his own words: living with non-Hodgkin lymphoma


John G. is a successful 54-year-old economist in California who keeps busy with full-time work, his wife of 31 years, and their three grown children. After a three-year battle with the indolent type of non-Hodgkin lymphoma (NHL), for which there is no known cure, he's living without symptoms, happy in a new job. He enjoys playing golf as well as his guitar.

What was your first sign that something was wrong? What symptoms did you experience?

It was detected asymptomatically. When I was 51, I took a routine set of tests to change life insurance policies and they detected excess protein in my urine. The protein ultimately turned out to be a kind of protein that signals cancer.

I was having other minor symptoms that I didn’t necessarily connect to NHL. I was more tired than usual. Most significantly I had some numbness in my hands and fingers that had been diagnosed as carpal tunnel syndrome, but nothing that any doctor would have said was a marker for NHL. Later on, I did have some gastrointestinal symptoms, but they didn’t amount to more than vague discomfort.

What was the diagnosis experience like?

I went to my primary care doctor and got a number of possible diagnoses, many of which were quite frightening. From the first sign of protein in my urine, it took four or five months to get a really firm diagnosis. That was a really long period of anxiety and emotional turbulence for my family and me. But that is not uncommon in NHL and other lymphomas because some of the symptoms you have can seem like other diseases. After I was diagnosed, I got a second opinion from an oncologist who specializes in lymphoma.

What was your initial and then longer-term reaction to the diagnosis?

Any diagnosis of cancer is like a blow to the stomach. It’s very hard to take. With NHL, there are two main types—indolent and acute. Indolent is the smoldering kind. On the plus side, it doesn't create a lot of immediate problems. But you can't cure it, generally, though you can live for 10 to 15 years and not need any therapy at all.

At times it feels devastating. For me, determining whom I wanted to tell and how much I wanted to tell were part of the difficulties of adjusting to having cancer.

How is non-Hodgkin lymphoma treated?

In the spring of 2000, when my blood tests showed an increase in protein levels and I had more stiffness and pain in my hands, I had a round of chemotherapy. I had treatments one week a month for three months. I felt really great after that.

I haven't had any other treatments since then, although last winter some of my blood tests were coming in high—but it got better on its own.

Did you have to make any lifestyle or dietary changes in response to non-Hodgkin lymphoma?

I've been pretty lucky in a lot of ways. After chemotherapy, I wound up taking a new job. I had worried that I would never be able to change jobs, but once I felt better, I could do that. It was difficult to manage what information I wanted to give at my new job, to my boss, and others. Some people know I have cancer and others don't. I didn’t want it to have an impact on what I was able to do.

I found that I developed some food allergies, one is to fish, but it's not clear if that's because of the lymphoma.

Did you seek any type of emotional support?

I've been seeing a therapist for about a year and a half. That has helped me. Dealing with death and some of the issues NHL creates can be difficult.

Does non-Hodgkin lymphoma have an impact on your family?

I know emotionally it affects my children and my wife. Sometimes I think it's more emotionally difficult for them than for me. We've talked about things we haven't talked about before, which can be positive in the long run even if it feels painful in the short run.

What advice would you give to anyone living with non-Hodgkin lymphoma?

Be kind to yourself. It’s a hard thing and not something you expected to have happen. You really need to rely on your family and friends. Be honest with them about how you're feeling—they need to be honest, too.

It’s also very important to seek out a lymphoma specialist and get a second opinion. There are a lot of new drugs coming along that hold a lot of promise. That's a very hopeful thing. Cancer used to be a death sentence; it really isn't anymore.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

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