When she was diagnosed, Sandy Peterson had never heard of chronic lymphocytic leukemia (CLL), a type of blood and bone marrow cancer, so she got to work learning about it. “I really appreciate the organizations who do research, provide support, and make it easy to access,” says Sandy an avid user of the Patient Empowerment Network (PEN) website, powerfulpatients.org. She says she likes to be able to access the resources whenever she wants or needs to revisit something she learned or read. Sandy follows several other organizations specific to her disease, and says each organization offers something a little different that she can benefit from. “PEN stands out with the activity guides,” she says noting that she especially likes how the PEN-Powered Activity Guides are formatted: like a book, where she can flip the pages and not have to scroll through them. “It’s fun,” she says.
Sandy says she learns a lot from the pages about understanding cancer, but she says she also likes the inclusion of articles that focus on lifestyle. “What I have enjoyed most are the recipes,” she says. She appreciates that they aren’t wild and fancy and that they include ingredients that she usually has on hand or can easily pick up at her local grocery store. Sandy also likes the fitness and the coloring pages and says they provide a pleasant distraction. “I look forward to that activity guide,” she says.
Sandy also values the webinars PEN provides. “The webinars are just wonderful. You can look at them again and do it at your leisure. It’s wonderful, and I’ve learned so much,” says Sandy who says she has gotten familiar with a lot of the presenters in the webinars and she looks forward to them because she appreciates their method of explaining things. Sandy has found that the key to putting her mind at ease and escaping fear about her disease is to understand it, which she says isn’t always easy, especially in the beginning. “Everyone knows what they’re talking about, and you don’t have a clue,” she says. “It’s the alphabet soup of a cancer diagnosis. It’s intellectual overload.”
On top of the intellectual overload that comes with being diagnosed with cancer, Sandy was also recovering from major surgery. It was in February 2011 and Sandy was just shy of turning 70 when she had to have emergency brain surgery. It still makes her emotional to talk about it, and Sandy says she doesn’t remember anything about that weekend, but she does know when she came out of surgery and they told her she was going to be fine, they also told her she had cancer. “I was worried about recovering from the brain surgery and was told it could be years before CLL became a problem for me,” she says. She was assigned to an oncologist, got an overview of her disease, and didn’t think much more about it. She had no symptoms, so she says the word cancer didn’t seem scary. However, she does say she was frustrated that her oncologist kept changing. She started with a hematology oncologist, but after a couple staffing changes, she ended up with a breast cancer specialist. “I didn’t complain because you kind of take who they give you,” says Sandy, but she said it just didn’t feel quite right.
By this time, Sandy had fully recovered from her brain surgery, and she started to do some research about her CLL. She started by looking online for reputable websites. Her tip is to avoid .com websites. The .com stands for commercial, and Sandy says she didn’t want to get her information from anyone who was selling something. “You have to do a little bit of searching to find the resources, but there’s a lot out there to support people who have cancer,” she says.
It was through her involvement with online support communities that Sandy learned she needed to make some changes in her cancer care. She says she kept seeing CLL experts and other patients refer to having treatment teams. “I realized I needed a team,” she says. She had her primary care doctor, and the breast cancer specialist, but she wanted a CLL specialist on her team. She had to go out of state to find one, but she did. After ten years with CLL, Sandy continues to have no symptoms and remains in the watchful waiting phase. Her most recent blood test was in mid-October 2020, and her numbers were essentially the same as they were a year ago. “It’s not going away, but it’s not progressing,” she says. “I am very, very fortunate.”
While Sandy is asymptomatic now, she’s concerned about the eventual progression of CLL. She says she’s not to the point of worry yet, but she wants to be prepared. “If it begins to progress and give me trouble at any time, I want to plan for a less healthy me.” She thinks about the logistics and expense of managing house and lawn care and wants to simplify her life so that if the disease progresses, she has a plan in place for managing those things. “It doesn’t have to be depressing, and you can do it while you’re still in control of the situation,” she says. “We not only want to simplify things for our own benefit, but for those who are going to help us.”
Sandy says she also thinks about what will happen if she ever needs treatment. “I’ve heard horror stories about the costs of treatment, and I don’t know how people pay for it,” she says. She stays on top of the latest CLL treatments and pays attention to the laws being passed about covering medications, and she says she’s open to doing a clinical trial if she has the opportunity. “The treatment picture for CLL is constantly changing,” she says, adding that new treatments are emerging, and more clinical trials are opening up all the time. “It’s really exciting.”
In the meantime, Sandy continues to find enjoyment by accessing yoga or tai chi classes online, staying up to date about her disease, and finding support from her trusted online communities like PEN. “It’s a lot to learn, and it’s changing all the time. The understanding is growing, the treatments are improving, there’s always something new,” she says.