Anne, Anaplastic Large Cell Lymphoma Survivor

In February of 1998, I noticed a painful small lump in my right armpit and immediately went in to see the doctor. They assumed it was an infected ingrown hair, and put me on antibiotics. Over a two-month period, I became sicker. The swelling in my armpit was more painful and pronounced. By April, it had swelled to twice the normal size. I went into the Emergency Room where they treated me with antibiotics for cellulitis and recommended that I return the next day. I was immediately admitted to the hospital, and was there for two and a half weeks while they tested me for every disease known to man. Finally, they did a surgical biopsy of a lymph node, and the pathology report came back with the diagnosis of lymphoma.

Before I was diagnosed, my husband and I were both suspecting that I had cancer. So, it wasn’t shocking. In fact, I don’t think I cried. The only time I ever cried was when I thought about my 9-year-old son. Thinking about him made me feel emotional. I wondered if I was going to survive. My life path had been turned upside down, and I had to somehow get my bearings again. It was a very odd feeling, like being a balloon that lost its tether, but that feeling only lasted a couple of days. Then I made the internal decision to survive, whatever effort it took. I decided to take over the management of my treatment and my medical visits. It gave me back a feeling of control.

“My life path had been turned upside down, and I had to somehow get my bearings again.”

I immediately started chemotherapy treatment which lasted for a year. I was being prepared for a stem cell transplant, which couldn’t occur until it was clear that I was responding to chemotherapy in a positive way. I ended up getting an autologous stem cell transplant in September of 1999, which means that my own cells were used. I’ve been cancer-free ever since.

Over the course of my treatment, I would drive myself to chemotherapy every month. My family was very willing to help, but I incorporated my treatment into my life. That allowed me to create a routine; each month, for one week, I’d have to receive chemotherapy and the other three weeks I would be able to live my life as I normally did. I went online, and joined a digest for people who shared information on lymphoma.

I’m involved with the Lymphoma Research Foundation (LRF) as a member of the LRF Ambassador Program, a network of representatives who serve as spokespersons and resource for a variety of audiences. I’m also a member of their Lymphoma Support Network, which is a buddy program. In the program, they match you with someone who has a similar diagnosis or who is looking at similar treatment. After meeting a newly diagnosed patient, one of the things I tell them is that the first 90 days after diagnosis are probably the worst. You’re scared to death. You’re thrown into the medical system in a way that you never thought you would be. At the same time, you’re trying to deal with your emotions and those of your loved ones and friends. It’s a very, very difficult time, but it does get better. You start to gain more control of the situation, and adjust to the diagnosis. When you have cancer, it is important to realize that cancer is a very individual disease because of how your body reacts to the chemotherapy and your unique body makeup. Many people do survive, and I tell patients that they have just as much right as anybody else to be one of the survivors.

“I encourage people to be their own best advocate.”

I encourage people to be their own best advocate. I did a lot of reading, and one thing that was very encouraging for me was that every time I mentioned to my doctor a chemotherapy drug that was applicable for my disease, my doctor had already heard of it and was able to talk to me about it. It was encouraging knowing how informed she was and that she was staying on top of the latest developments. Nobody cares about your life as much as you do. So, don’t be afraid to get a second opinion, and don’t be afraid to question your doctor. Good doctors aren’t threatened by that. They welcome patient involvement.

You can successfully come out the other side of this journey and go on to live the rest of your life. It’s a real hope these days — a lot of people are doing it.