Karen Allen will tell you that she’s a married, middle aged, middle income, mother of two. Her friends might tell you she’s actually a biker chick. But what you can’t see from either perspective is that she is living well with follicular non-Hodgkin’s lymphoma.
It began in June 2008. Karen was 47 years old and feeling tired—really tired. Employed by the Wenatchee School District, Karen figured her busy life gave her plenty of reasons to feel tired, with a full-time job and two teenaged daughters. But she began seeing her doctor about other things, and told him she’d been more tired than usual for a while—she figured she was just getting old.
“But in the back of my mind, I knew I was sick,” Karen says. “Of course I looked online at my symptoms, but I couldn’t really find anything. I’d had a lump under my jaw that had always been dismissed.”
One day in the shower, Karen saw several lumps along her rib cage. “That was new. I got in to see my doctor that day,” she says.
Karen’s doctor told her that it could be lymphoma. She was sent to the hospital for a fine needle biopsy and a few days later, she met with an oncologist who said her lymphoma was probably follicular non-Hodgkin’s lymphoma (FNHL). Other diagnostic tests showed Karen’s disease was stage IV, which means she had widespread lymphoma in her lymph nodes and at least one other organ, such as the bone marrow, lungs, and liver. FNHL is often diagnosed in later stages because it is an indolent cancer and can be very quiet.
Because of Karen’s overall excellent health, her oncologist in her hometown wanted to watch it and wait to begin treatment instead of immediately initiating treatment.
“I thought it seemed counter-intuitive. Watch it progress?" Karen says. "A cancer diagnosis is difficult news, but to me, the suggestion of not immediately treating my disease was like a punch in the stomach. I went looking for more information.”
Karen headed to Seattle where she received a second opinion in the completely opposite direction, including getting ready for a bone marrow transplant. “The opinions were so diverse, I went back to my primary oncologist with what I learned in Seattle and she suggested I go see Ajay Gopal, MD at Seattle Cancer Care Alliance.”
Karen saw Dr. Gopal who explained the latest data and the standard approach for this type of lymphoma. “Even though I wasn’t having night sweats or anything,” she says. “He also told me about a clinical trial,” she says.
Treatment on a clinical study
Karen and her husband David went home and talked about it. They decided to move forward and participate in the clinical trial, “Within the clinical trial, my lymphoma would end up being treated much like a chronic disease,” Karen says. “I wanted to switch to a proactive approach instead of all the internal pressure of watch and wait."
Karen began treatment on a study taking Rituximab and a vitamin A derivative that synergizes with Rituximab. "It is a low-toxicity, continuous therapy that controls this slow-growing cancer and provides good disease control," Dr. Gopal says.
Karen had her first infusion of Rituximab the day before Thanksgiving 2008. She went once a week for four weeks and then went to a quarterly schedule after that. Within three months, she was feeling better – “remarkably normal,” she says. “Maybe it was psychosomatic, but I don’t think so. Regardless, I’ll take it!”
Later that month, Karen began treatment with Fenretinide, as Karen says, “great orange horse pills.” She takes 32 of them every day! Sixteen in the morning and another sixteen at night. “At first, I thought taking so many large pills was an impossible task, but it quickly became easy. My girlfriend, who’s a nurse, laughingly suggested they were suppositories!”
As a participant in the clinical trial, she gets a PET CT (positron emission tomography with computed tomography) every six months to monitor her disease, along with blood draws and bone marrow biopsies before each infusion. Again, what initially seemed daunting became easier with time.
Living with cancer
Karen is one of those lucky people who was never ill. She’d never been injured, despite always being active with sports. She never smoked, was never overweight, and had been a very moderate drinker of alcohol, making her diagnosis all the more hard to understand and bizarre. She had no obvious risk factors or cancers in her family.
“You don’t really know how to navigate a cancer journey,” Karen says. “You get directed. It’s staggering – all the bills from doctors, like pathologists, you’ve never heard of before. It’s almost as if you have to learn to be a cancer patient.”
Today, her disease remains stable. Sometimes when caught at earlier stages, this type of lymphoma can be cured. However, there is no cure for Karen’s stage of disease.
“With my lymphoma being treated much like a chronic disease, I feel a sense of control,” Karen says.
Eventually, her disease may transform into a more aggressive B-cell form of cancer. “When that happens, I might get the hallmark night sweats and feel puny,” Karen says. “And then we’ll treat that cancer and learn more about a bone marrow transplant at that time, too.”
In the spring of 2009, Karen decided to take a motorcycle safety class as a diversion from cancer. “It was $125 over a weekend,” she says. “Perfect!”
Karen passed the course and soon met a woman who had ridden her motorcycle alone across the country from Florida to Vancouver Island, British Columbia, raising $12,000 for breast cancer along the way. Her name was Flo Fuhr and she had taken extensive training from a Florida company called Ride Like A Pro.
“Flo told me she would help me find a motorcycle,” Karen says. Flo lived in Campbell River on Vancouver Island. Karen was instantly at ease with her and when Flo did find the perfect motorcycle, Karen wired her $5,000 after only knowing her for two hours!
A big adventure ensued… with her neighbor’s motorcycle trailer, Karen drove into Seattle from her home in Wenatchee to get her infusion at Seattle Cancer Care Alliance, spent the night with friends, and the next day, drove to Canada to pick up her new motorcycle.
She met Flo in Campbell River and stayed at her home for three days, while Flo taught Karen how to ride her new motorcycle in the evenings after work on a closed parking lot painted with practice patterns. And ride she did. With the help of some friends from her hometown, Karen soon became part of her local motorcycling community. “It was a huge gift of wellness for me. I have many people to thank for that,” she says.
In July 2010, Karen decided to ride with Flo, who had made an annual event out of riding and raising money for breast cancer every summer. Instead of riding across the country, they decided to meet in Cheyenne, Wyoming and invited as many bikers as they could to join them from across the U.S and Canada. They called the ride the Women Who Ride Conga –“You jump in and jump out whenever you want to from wherever you live,” Karen explains. They raised a lot of money that summer—over $34,000.
The 2011, WWR Conga met in beautiful Shell, Wyoming. That’s where the Conga Ladies were reunited with Tamela Rich, cross-country motorcyclist and author of Live Full Throttle: Life Lessons From Friends Who Faced Cancer.
“Many of us were interviewed for the book,” Karen says. “A chapter is based on my story and the idea that all of us have no idea when or how our life will end. We’re all ‘terminal’.
“There’s nothing like being on a motorcycle, especially when helping others along the way,” Karen says. “I plan my trips around my treatments. The Rituxin isn’t hard to deal with as it's given IV. Infusion-day steroids fool me into feeling like I can do anything the day after treatment – I feel great! The day after though I feel kind of tired and want to relax –a sign the steroids are leaving me. Otherwise, by the third day, it’s go, go, go!”
Karen says it’s been interesting being a cancer patient who looks healthy and is happy.
“People call me for advice,” she says. “They ask me, ‘How do you do it, how do you live happily?’ And my answer to them—give and serve; get outside of your normal self. For me, it took a motorcycle and an annual breast cancer fundraiser. Listening to others walk this cancer path unites me with others who are fighting. A sense of humor is vital to wellness. I take riding very seriously, but I’ve teased Dr. Gopal about being a biker; he said with my cancer it probably wasn’t a good idea to get a tattoo. Instead, I’m thinking about getting a second bike for off-road. I can’t wait to see what’s around the next bend!”<< PREVIOUS | NEXT >>