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In his own words: living with Hodgkin’s disease
As told to Virginia Mansfield
Three years ago at age 39, Rob* was diagnosed with Hodgkin’s disease. Fortunately, it was detected in the early stages and was aggressively treated with chemotherapy and radiation. He continues to get good reports at his follow-up visits and has returned to his active lifestyle with his wife and four children. Rob is in sales, and enjoys biking, hiking, and just being outdoors.
What was your first sign that something was wrong? What symptoms did you experience?
I was driving in my car when a bug flew in the window and hit me on the neck. As I brushed it away, I felt a bump. Another thing was that I was always so exhausted. However, the tiredness was such a gradual thing; I didn’t really associate it with something being wrong. For two years I had a rash in the middle of my chest that I thought was just dry skin. I didn’t realize these were warning signs for what turned out to be Hodgkin’s disease.
What was the diagnosis experience like?
I went to my family doctor first about the bump on my neck. He looked at it and said it was unusual, but wanted to give it a week or two. It didn’t go away, so he referred me to a general surgeon to have it biopsied. The biopsy came back indicating it was Hodgkin’s. The bump was a lymph node that was very close to the surface. The cancer was classified as a 2A (1A being the best and 4D being the worst).
What was your initial and then longer-term reaction to the diagnosis?
Initially, you think the world is coming to an end. I guess I was nervous, and there was a little bit of fear there. It was hard to believe this was really happening to me. But once we got further into it, I learned that the type of cancer I had was actually considered curable. So I realized that it wasn't so bad. Had I let it go, it could have killed me.
How is Hodgkin’s disease treated?
First I went through 4 months of chemotherapy—eight cycles going every other week. The chemo I was given was fairly strong, so I took medication to boost my immune system. I also took medication for heartburn, which was a side effect of the chemotherapy. The side effects of the chemotherapy seemed to get progressively worse. I would feel worse for a longer period of time. By the time I had my last chemo treatment, it would really take my energy away. I would be in bed for 2–3 days following the treatment.
One of the drugs I was taking affected my lungs. I would have periods of time where I couldn't catch my breath. They took me off of it for the last two treatments. Then I had six weeks of radiation after that—going five days a week. I've been doing three-month follow-up visits for the first two years, and then six-month follow-up visits this past year. They do a CAT scan and a full exam. After this year, they'll just do an annual check to be sure everything is okay. Other than that, I don't really have to do anything for treatment.
Did you have to make any lifestyle or dietary changes in response to having Hodgkin’s disease?
As far as dietary changes, we are much more aware of cleaning fresh vegetables and fruits before we eat them. We soak all our vegetables in a solution to help remove the pesticides. You can see the stuff coming out of the vegetables when you do that. There's usually a film that surfaces at the top of the water. I eat more organic foods and health foods than I did before. I guess the biggest change is that I drink more water. I just try to eat a balanced diet. I don't want to be a fanatic. We have always exercised, so I can't really say that's a change.
I don't know if this is a lifestyle change, but I think I'm more aware of people who go through something like this. I feel more empathy for them than I used to before my diagnosis. It has also caused me to do a lot more evaluation of my life and my future.
Did you seek any type of emotional support?
My family was real supportive. They were always there for me. I've been blessed with a family that really loves me. Also, my faith in God grew leaps and bounds. It is a very humbling experience, because you aren't in control and you don't know what’s going on with you. It was a great peace to know that my life was in God’s hands. I can't imagine going through it without my family and my faith.
There was also a group in town called, “Ribbon of Hope.” They are a support group for people diagnosed with cancer. They called me one day and wanted to know if it was okay for them to come to my house to visit. They came over and talked to me about how I was handling the diagnosis, treatment, and just dealing with having cancer. They invited me to the meetings, but I never ended up going. I guess I felt that I had the support I needed, but if I didn’t, I'm sure I would have gone. It seemed like a really great organization. I've told several other people about it.
Does having Hodgkin’s disease have an impact on your family?
I think my wife and kids were real fearful that they might lose me. We spend more time together than we did before. My wife said the treatments had an impact on my emotions, but I didn’t really realize that. My wife has been a real trooper.
What advice would you give to anyone living with Hodgkin’s disease?
I would suggest that they make God a priority in their life. Second, I would suggest that they get a support system to help them get through it. It just helps to talk to other people who understand.
*Not his real name
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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