Stories of Hope

Sue, Peripheral T-cell Lymphoma Survivor

I was diagnosed with peripheral T-cell lymphoma (PTCL) in July of 2011. I had an enlarged lymph node that my primary care physician kept telling me was a “shotty” lymph node. It was so big at one point that finally I just said, “This can’t possibly be right.” I made an appointment with a head and neck specialist who did an incisional biopsy in May and found suspicions of T-cell lymphoma, but they didn’t confirm it until they did an excisional biopsy in July.

Prior to that, I was feeling very fatigued, but I still had enough energy that people didn’t believe that I was tired — holding down a full-time job and having children provides a lot of reasons to be tired. My primary care physician had been telling me that I should go home, lose some weight, and pull myself out of it. I really started to think there was something wrong. So, it was a bit of a relief to know this wasn’t in my head; I finally had a diagnosis and knew there was something that we could do.

My husband was with me when the doctor confirmed that it was T-cell lymphoma. We talked about what we thought this meant, but I don’t think I said the word “cancer” for a long time.

“I took time alone to think and in that moment, I decided that I was going to be a survivor.”

After the diagnosis, which was on a Friday, friends and family gathered around me, and I really didn’t have any alone time until the following Tuesday, when I had to go and get the second bone marrow biopsy and a positron emission tomography (PET)/computed tomography (CT) scan to determine the stage of disease. I decided to make that four-hour drive by myself. That was the best thing I ever did because on that trip, instead of people talking to me and keeping my mind busy and distracted from it, I looked that diagnosis in the face. I did extensive research on the Internet and realized that 30 percent of people diagnosed with this type of lymphoma are alive five years later. I was really able to look at that and think, “Okay, why am I going to be in that 30 percent? I’m going to survive because…” I think that was probably the most important thing I did. I took that time alone to think and in that moment, I decided that I was going to be a survivor.

Within a few days, I had my first chemotherapy treatment. The hardest thing for me was not knowing what to expect. Since everyone is different, the doctors and nurses cannot predict how your body will react to the chemo. At first, the chemo was hard for me because they used pegfilgrastim (Neulasta), and the bone pain was unbelievable. It felt as though there were fireworks in my bones. Fortunately, that was really the only side effect I experienced. In addition to chemo, I also decided to have a stem cell transplant.

I contacted the Lymphoma Research Foundation (LRF) and asked to connect with someone who had the same type of lymphoma. Through their Lymphoma Support Network, LRF put me in touch with someone who had a similar type of cancer, with a similar outcome, and who had not only had an autologous transplant, which is what I had, but who had an allogeneic transplant, as well. She just hit her five-year mark. She was fabulous and instrumental in helping getting me through the difficult times. She told me little things that gave me some control over my surroundings and what was going to happen to me. She said things like, “Take your own washcloths so you always have a fresh one. Just buy a big package of them. It’s five bucks, and it makes you so comfortable.” Although nothing can completely prepare you for what you will experience, having someone there that has been through it was such a comfort to me.

“There are things I can do, and there are reasons why I need to live, and why I want to live, and why I CAN live.”

What I would say to a new patient is that you are the one who makes up your mind how you’re going to deal with this disease; you CAN deal with it. You can tell yourself it’s the end of the world, or you can say, “I have options. There are things I can do, and there are reasons why I need to live, and why I want to live, and why I CAN live. And you have to identify those things and focus on those.”

I looked at my treatment like jumping a horse (which I have done). There’s a mental process that you go through when you’re riding horses, especially the jumping courses. You think about how many paces you have until the next jump, and where exactly you want your feet to be when you jump. Most importantly, you throw your heart over that jump before your horse and head go over. You have to imagine yourself on the other side, or the horse stops dead. You must know what the hurdles are, mentally prepare yourself, physically get there and do it. And you should keep your eye on the next hurdle all the time. You can’t say, “Oh, I didn’t do that hurdle well enough!” or “I skinned my knee on that hurdle!” You must just keep going, get to the next hurdle, and keep your eye on the finish line.
I would encourage newly diagnosed patients to draw on all available resources. People love to help. Sometimes they don’t know how, so just tell them, “Do whatever you feel like. Call me and talk. I’ll put the phone off if I want to sleep. Go ahead and call.” A lot of people are afraid to pick up the phone. You know, sometimes, I just wanted to hear about their day instead of mine.

I know it’s very difficult. I am one of the lucky people. It sounds strange to have a horrible disease and say you’re one of the luckiest people on the planet, but I do feel fortunate. So, keep your eye on the next jump, and throw your heart over ahead of you and stay positive.