Penny describes herself as a very energetic person, but suddenly found she was very tired all the time. It got so bad that eventually, she could not even walk two blocks. She decided it was time to call the doctor, but she had just moved to a new city and had to find one first. After a few tries, she finally found a doctor who decided to run a complete CDC blood panel to try to cover everything. She said, “The next day the doctor asked me to come into his office. He said, ‘I am very sorry to have to tell you that the tests indicate Leukemia. I have made an appointment for you to have a bone marrow biopsy done tomorrow.’ I remember driving home and trying to stay focused on preparing a birthday dinner for my partner, David, that night. Of course, I burned it. The biopsy confirmed the diagnosis of advanced and aggressive Chronic Lymphocytic Leukemia (CLL). That was in July of 2012 and I am still in treatment.”
Penny has a long-time boyfriend of 14 years and two sons. Both of her sons are grown and live in two entirely different cities. She decided to reach out to her boyfriend’s cousin who is an oncologist in New York City for a second opinion. He validated the diagnosis and recommended a clinical trial offered at a hospital in New York City. She immediately started the process of looking for somewhere to stay while she was in treatment, and didn’t have much luck with apartments. One of the nurses reached out to her and told her about Hope Lodge. It is a program that is part of the American Cancer Society and offers cancer patients and their caregivers a free place to stay while in active treatment. Her application was quickly accepted, and she said, “To have a place to stay that would enable me to get the treatment I needed was a huge weight lifted off my shoulders.”
The next step was to tell her sons. She said, “I was worried about how to tell my boys. Even though they were adults, it was very difficult. Having to say ‘I have cancer’ was so hard. I tried to educate myself to have a better understanding of my diagnosis in order to answer some of the questions I knew they would have. As a mother, I tried to look at it as an opportunity to show them courage.
I arrived in New York for my initial round of treatments and was there for six months. I was going to the hospital several times a week for infusions. While it was a difficult time, I found a great family at Hope Lodge. They were my support system. It was comforting to be surrounded by other people who were going through the same thing. It made me feel powerful to share my experiences that could help someone else at a time when I felt powerless. I made great, life-long friends.”
Now Penny is back home and is on a BTK inhibitor, an alternative to chemotherapy. She said that she has learned that she is stronger than she thought. “Cancer has changed my life forever. All cancer is chronic. It’s always there in the back of my mind. But I also have this huge gratitude for both the medical treatments that have worked for me as well as the emotional support from everyone in my life.”
Before the pandemic, she spent a lot of her time volunteering for the American Cancer Society, helping to raise money for the Hope Lodge program. It touched her life so much, that she wanted to give back. Unable to go during the pandemic, she spent a lot of time walking on the beach. And now she would like to start advocating for cancer patients at the legislative level. She is hoping to spark a change by speaking out about the cost of medications and treatments.
Penny is a patient at Onco360. She said, “Onco360 has helped me significantly overcome the fear of the cost of my medication. Their OncoAdvocate® Team found me a grant to help with my copay and drastically reduced my stress. That along with the reassurance I constantly receive from speaking with the pharmacy has significantly reduced my concerns about my medications. I know Onco360 always does the best it can for me. I am lucky to have found them!”