Follicular Lymphoma Survivor

There is No “Right” Way to Do Survivorship

Dr. Wendy Harpham was diagnosed with follicular lymphoma before many of the newer advancements in treatment became available. When ongoing illness forced her to retire from clinical medicine, her medical knowledge and experiences with treatment made it possible for her to help other survivors going through similar circumstances. She has been active in writing, speaking and blogging about healthy survivorship, as well as advocacy work, patient advisory boards and cancer survivorship workgroups. As an adjunct professor at University of Texas at Dallas, she mentors premedical students. She enjoys reading, listening to classical music, visiting with her children and grandson and spending time with her husband, Ted.

Several years after moving to Texas from New York and opening a medical practice, I noticed slightly enlarged lymph nodes in my groin area. I had felt them for a couple of years, but they didn’t bother me. In 1990, over the course of a few weeks, the lymph nodes began growing and pressing on nerves in my leg, causing increasing pain. The pain became severe enough that I was admitted to the hospital for pain control and surgery to decompress the injured nerves. That surgery and a second surgery two days later helped my doctors diagnose Stage III follicular non-Hodgkin lymphoma.

I was in so much pain at the time that I really didn’t have a chance to get a second opinion about treatment. The doctors felt an urgent need to begin treatment right away. My oncologist consulted with lymphoma specialists around the country to determine the best course of treatment for me: a cocktail of seven chemotherapy drugs.

After chemotherapy, I achieved remission, but the lymphoma recurred less than a year later. For the next 15 years, I went in and out of remission, my lymphoma responding to each of eight more courses of various cancer therapies, including immunotherapies received in three different clinical trials. My last treatment was in 2007, and my lymphoma has stayed in complete remission since.

The first time I was treated was before the availability of effective antiemetics (anti-nausea medications), growth stimulating factors and ports. I was ill with nausea, vomiting, leg pain, fatigue, insomnia and gastrointestinal issues, such as esophagitis (inflammation of the esophagus) and colitis (inflammation of the colon). The ongoing illness and side effect challenges forced me to stop practicing medicine.

My primary focus became my family and helping my three children deal with the changes. They were not quite 2, 4 and 6 years old when I was first diagnosed. Unexpectedly, I began writing articles and books for patients, using my perspective as physician survivor to help others. My husband and I joke that I wrote my first book while I was awake at night because of the steroids I was taking. More importantly, writing distracted me from my pain and other discomforts while helping me hold on to my identity as a physician.

The support of family and friends was so important, especially during the first few years when I needed help caring for our children. Throughout my initial chemo, I didn’t think I needed any support groups or counseling. Even though I had referred many of my patients to social workers and counselors, I now know that I didn’t fully understand how valuable they can be when dealing with a serious illness.

During my first remission, without access to the survivorship resources that are available today, my post-treatment anxiety and sadness blindsided me. Fortunately, I met a social worker during an overnight hospital stay for a post-treatment complication. She told me about her support group, which I joined. Soon, I began seeing her privately on a regular basis.

One-on-one counseling proved to be incredibly helpful for dealing with my uncertainty and stress. She helped me face my fears and learn to manage them. Having a professional to talk to helped me put my emotional life back together after cancer had fractured it. Those sessions helped me embrace life between sessions, whatever was happening medically. I cannot stress enough how valuable oncology social workers can be when you are dealing with cancer.

All these years, I’ve done a lot of advocacy work. I’m a founding member of the Dallas chapter of the Lymphoma Research Foundation and have been team captain of Wendy’s Eagles in the Dallas Lymphoma Walk since 2004, raising more than $100,000. I’ve been involved in patient advisory boards and cancer survivorship workgroups on local, state and national levels.

I don’t fear recurrence anymore. I tamed that fear by accepting the uncertainty and focusing on all the things I can do to stay healthy (follow-up appointments; healthy diet; regular exercise; sleep; fulfilling relationships and work). I maintain hope that effective treatments will be available if I need them — a realistic hope, given the advances in lymphoma treatments. I nourish confidence that I’ll deal with whatever happens.

There is no single “right” way to do survivorship. Everyone forges and follows his or her own personal journey. To others going through cancer, I recommend you obtain sound knowledge, find and nourish realistic hope, and take effective action. Learn from others how you do — and don’t — want to handle things. Ask for and accept help when needed. When you’re not making treatment decisions or dealing with a medical problem, embrace the non-cancer parts of your life. Cancer is not who you are; it is just one part of your life. There is life after cancer. Make it a good life.