Hodgkin Lymphoma Lymphoma Survivor

Living Beyond Lymphoma

Linda Hanley was 47 when she discovered she had Hodgkin lymphoma. Throughout her treatment, she focused on having a light at the end of the tunnel. Today she travels and lives life to the fullest.

It was the summer of 1993, extremely rainy with very high mold counts. I had developed a cough that wouldn’t go away. Although I’d been to see my doctor several times, nothing worked. Then a lump developed above my collarbone. Because I already had an appointment with an ear, nose and throat specialist, he was the first doctor I talked to about it. He called my primary care physician immediately and I went in for testing.

After my diagnosis, my husband and I did our homework, becoming familiar with the disease and the treatment options. At the time, there were not a lot of resources available, but we knew we needed more information than the basic brochures we received from the doctor’s office. Luckily, one of the nurses we met at the hospital was kind enough to copy the 23-page Hodgkin section of Principles & Practice of Oncology from the physicians’ library.

When I considered my different treatment options, I wanted to know what the permanent side effects were. I knew I could grit my teeth and get through the short-term stuff, but I needed to know what changes were going to be permanent. My options were essentially chemotherapy or radiation therapy. At the time, the permanent effects of radiation to the area of my body where the lymphoma had accumulated were potential heart and lung problems and permanent dry mouth. And chemotherapy caused infertility. Because I was already 47 and infertility was not an issue, I decided to get chemo.

Treatment launched me into menopause, so I could not always differentiate which side effects were treatment-related and which were due to the menopause. I received six months of chemotherapy. I had to stop one of the drugs in my regimen early because it was causing significant neuropathy. For one year after treatment ended, I could not step up on my tiptoes.

After treatment ended, they discovered a spot on the imaging scans that had developed during treatment. We thought it was likely just scar tissues, but the radiologist wanted to radiate anyway. In all of the research we’d done, my husband and I discovered that at my age, receiving multiple types of treatment (called combined modality) significantly increased my risk of developing leukemia as a second cancer. Because of this risk, I refused, but my doctor asked me to get a second opinion. Another radiation oncologist suggested limited-dose radiation to the suspicious area, which did not come with an increased risk of a second cancer. I felt confident in his assessment so we added it to my treatment plan.

Through all of it, having a light at the end of the tunnel helped me get through treatment. I planned to attend a figure skating show shortly after treatment ended and was determined to make it. I needed help navigating the stairs, but I was there!

Since my diagnosis, I’ve gotten more assertive. When it is your health, you have to look out for you. I would also suggest always taking somebody with you to the appointments and to treatment. They not only help you absorb the information but will also look out for you. I almost received the wrong chemotherapy drug once, and I would have if my husband hadn’t been paying attention and known what to look for.

I’ve also done so much more now that I wouldn’t have done in my younger, more conservative days. I decided that I lived through cancer, and I’m going to continue living because there is so much more I want to do! I’ve gone skydiving and have traveled extensively. I am now eligible to join the travelers’ century club, a club for people who have been to 100 or more countries or regions – I’ve been to 105!

My best advice for those newly diagnosed is to do your homework. Research the latest treatment advancements and know what all of your options are before you make a decision. Find a doctor you can trust and talk to people. Talk to other survivors. Get the information you need to take control of your care!