"Live for each day and do what you enjoy." Kathleen Flatley, Chronic Lymphocytic Leukemia Survivor
In May of 2005, after going through menopause, I experienced some irregular bleeding and went to my family doctor for a checkup. The nurse practitioner and my primary care physician did a palpation of my abdomen, but didn't find any lumps and suggested I see my gynecologist. During this time, I also had a mammogram and a lump was discovered in my breast so I scheduled a biopsy. Before having the biopsy, I went to the gynecologist and, after palpating me, my doctor found a lump in my abdomen and suggested I get a CAT (computer axial tomography) scan. After having the CAT scan, my doctor called me the following day and said I needed to come in; that the results from the CAT scan came back and that I had lumps in my pelvis and abdomen, and my lymph nodes were cancerous.
Before starting treatment, I needed to have a biopsy to see if I had breast cancer; then I had a dilation and curettage to see if I had uterine cancer. Additionally, they performed a bone marrow test and I was shocked when I was told my diagnosis was Stage IV Chronic Lymphocytic Leukemia (CLL). I was told I needed to start aggressive treatment. There was so much going on that I felt like I was in the sky looking down at a person going through this and that it wasn't really me. Although I was scared, I was more worried for my husband and my four daughters. My family is very close.
All of my life, I was petrified of cancer. My husband's sister was diagnosed with Hodgkin lymphoma in 1972. Things were so different then; she was in an older-type hospital ward, so I had that image in my head. I had never been in the hospital other than for a broken ankle and to have my four daughters. I am happy to say that my fear went out the door when I started my treatment of prednisone, rituxan, cytoxan, and fludara. The facility was welcoming, my treatment room was comfortable, and the staff made this a better experience than I had anticipated. My nurse was very understanding and very thorough. She took the time to explain everything to me regarding the chemotherapy process. She showed me where and how it would be administered and she also gave me a few helpful hints because I was nervous about feeling nauseous and getting sick. I finished my treatment and was in remission for five years, but in 2010, the cancer came back. I had the exact same treatment of prednisone, rituxan, cytoxan, and fludara and, thankfully, it worked again. My doctors were surprised because they figured the disease would become refractory. The only negative thing was my white blood count. In fact, for the past few years it has been low. But, you know, whenever I have had bronchitis or anything like that, I have managed to get through it fine.
My advice to a newly diagnosed patient is to educate yourself on your disease. After my initial diagnosis, I read a lot of books. There are wonderful books available about people who have had cancer and how they dealt with it. There is also a lot of information available on clinical trials and new treatments that are in development, and the research is amazing. I was happy to see the progress that's been made since 2005, both in treatments and in the drugs that are now available.
After having survived CLL, one thing that I do differently is that I don't put things off until tomorrow. I do things when I can and I seize the day. I had always been interested in jewelry making and wanted to take it to another level, but never did. Since my cancer diagnosis, I've learned how to do silver smithing and how to cut my own gemstones to make actual jewelry.
I became involved with the Lymphoma Research Foundation (LRF) after receiving a communication from them. LRF offers a lot of useful services, but I particularly enjoy the Stories of Hope feature, which is available on the LRF website. I enjoy reading peoples stories and learning from what others have shared. LRF also put me in contact with a few people that I have corresponded with via their Lymphoma Support Network. It's nice to listen to people and provide them with information that I found useful as I went through my treatment.