Watching, Waiting, Still Doing: Jackie’s Story
Jackie Roberts’ story about cancer began in 1988 when she broke her jaw in a car accident. Despite many, many surgeries to repair it, she endured 17 years of incredible pain. But at last, in 2005, having found a doctor who’d developed a joint replacement that was likely to work, she scheduled surgery.
“I went to my primary care doctor for a physical and the usual pre-operative blood work. I was working as a drug and alcohol counselor in a Schuylkill County prison. I loved my job, and life was good.” Jackie shifts her weight on the light blue chair. “And then, the doctor called to say that my white cell count was 48,000 [normal range: 4,500-10,000 white blood cells per microliter; National Institutes of Health], and referred me to a hematologist to rule out leukemia or other blood disorders.” Jackie’s eyes widen.
“I was shocked, of course. I couldn’t believe that both of these were happening to me.” She was about to be free of the pain that had crippled her for so many years—and now the possibility of cancer. “As I looked around the waiting room at the hematologist’s office, I got a bad feeling,” she simply says. But more than that, she feared that she couldn’t have the jaw operation.
The hematologist immediately repeated her blood work, looked at some slides, and then told her he was pretty confident she had chronic lymphocytic leukemia (CLL).
That was startling enough, but then he noted that the cells were mature, meaning that she had had CLL for some time. Jackie thought back, recalling the past few winters when she always seemed to be sick with the hacking cough and weakness of bronchitis; she’d always thought it was because she had a long, cold, windy walk to her workplace. But maybe that wasn’t it, after all.
“I’m scheduled for surgery next week,” Jackie told the doctor, terrified that he would tell her to postpone it. But he didn’t. He told her to go ahead with the surgery, which, happily, was successful.
And now it was time to turn her attention to her chronic lymphocytic leukemia.
“I was told I didn’t need treatment right away, that I would be on something called ‘Watch and Wait (W&W),’ but those of us who have it, call it ‘Watch and Worry.’” Jackie fingers the small pendant on her necklace. “I didn’t have a clue about this disease. I only had heard about leukemia, and that it wasn’t good. But then I began doing research, learning all I could about what I had.” She got a second opinion from an oncologist at a pre-eminent cancer center, and traveled far to visit him every three to four months.
She waited and watched and worried as her white cell count climbed. Racked with incredible fatigue and a cold that wouldn’t go away, she was barely able to go to work. She had used up her sick time, and began to owe her employer time. How could she repay her employer when she could scarcely get out of bed?
And then something unexpected and wonderful happened: her co-workers anonymously donated their unused vacation and personal time on Jackie’s behalf to the employer. She didn’t know who most of her benefactors were; it was a secret support system, but now her slate at work was clean. “It’s amazing what people will do for you when you’re down,” she smiles.
Jackie’s blood counts, though rising, were still acceptable; the oncologist said he’d keep watching. She was again sick with bronchitis, and even after several rounds of antibiotics, still wasn’t better.
The illness persisted, and suddenly, one morning in April 2011, she began having vertigo, pounding headaches, and even worse fatigue. Reluctantly, she called her sister at work to take her to the emergency room. Although a chest x-ray was negative for pneumonia, the doctor wasn’t satisfied with the report, and followed up with a CT scan, which showed upper and lower lobe pneumonia. Jackie spent four days in the hospital.
Could this be part of the leukemia? Tired of watching and waiting, when she just knew, despite the lab reports, that she was getting worse, she switched oncologists.
Her new doctor looked through the six years of records and commented that he couldn’t find any treatment records. “That’s because I haven’t had treatment,” Jackie replied. “My blood work looks ok, but I am getting sicker and sicker.”
This new oncologist didn’t just watch. Within a week, Jackie started chemotherapy three times a month for four months.
“I felt a lot better. The fatigue was less, and finally, my blood work was in the normal range,” she sips from her bottle of water. But she knows it will return. That is the nature of this type of leukemia.
But just because she’s watching, she hasn’t stopped doing.
Because a work-related injury had sidelined her from her job, she’d been able to move to the Lehigh Valley in 2009 to live with her sister, a recent widow. It was a good move because her daughter lives in Arizona and her son, up north. But she didn’t know a soul. In keeping with her training as a social worker, she soon began to fashion a new support network.
She got involved with Team in Training, and began raising money for the Leukemia and Lymphoma Society [LLS]. She made friends through the organization, and even last year, during chemo, she was part of the race. “My teammates and coaches took turns pushing me in a wheelchair for 13.1 miles. We made it, and I got a medal,” she smiles at the memory.
The Cancer Support Community is another part of the support system Jackie knitted together. “Last year, while getting chemo, I found some information about the organization. As a social worker, I like support groups. Having facilitated many of them, I know they work.” She places her water bottle on the floor at her feet.
“While going through chemo last year, I started attending some of the many programs offered here. I’m here most Mondays for my regular support group, even when I’m feeling well. If I can help someone else, it helps me. Helping someone takes me away from my own problems.
“I worried that I wouldn’t have a support system when I moved here. But, I found one. This is my support system. It’s here! They’re all here!” She gestures around the Cancer Support Community’s dark-paneled library.