Lynda Wolters was in her 40s and at the peak of her physical fitness. She exercised heavily, danced ballroom, hiked, rafted, and rode horses. But her body began to send warning signs.
How she first knew something was wrong
Wolters developed a sensitive stomach. Spicy foods, red meat, dairy, wheat, nuts, raw vegetables, and anything with preservatives or artificial coloring caused severe bloating, pain, and diarrhea. Her periods became irregular, and her heart raced. She was diagnosed with hypothyroidism and prescribed a daily pill, but the problems continued. She lost weight dramatically. Her stomach intolerance turned into nausea and loss of appetite. She could only eat small amounts of organic chicken, apples, blueberries, oats, and green leaf lettuce.
Wolters avoided most traditional medical care. She took only the thyroid pill and went to her yearly exam and mammogram. Then, one day in the shower, she noticed a chain of lymph nodes bulging from the side of her neck. She weighed just over 100 pounds, could not exercise, and struggled to walk up a flight of stairs. Fatigue made it hard to keep her eyes open.
In the following months, she was diagnosed with rare, incurable stage 4 Mantle Cell Lymphoma (MCL). That began a years-long effort to save her life.
Her journey with lymphoma
Blood cancers fall into three categories: leukemia, Hodgkin’s lymphoma, and non-Hodgkin’s lymphoma. MCL is a non-Hodgkin’s lymphoma. There are about 60 subtypes of non-Hodgkin’s lymphomas. MCL patients make up only 5 percent of all non-Hodgkin’s diagnoses. Of that 5 percent, three-quarters are men over 60. Wolters was a 49-year-old woman. The average life expectancy with MCL is five years. As one of her sons said, “Mom, you didn’t just draw the short straw. You drew the shortest straw.”
During her first year of treatment, she commuted 1,800 miles one way to MD Anderson Cancer Center in Houston, Texas. She was accepted into a clinical trial that offered hope of extending her life to 10 years instead of five. Her local oncologist told her she was too young and her case too rare for standard care. She was patient number 132 out of 160 in the trial.
After nearly a year of weekly trips to Houston, she began inpatient chemotherapy. Each round required five to six days in the hospital. Following chemo, she had maintenance infusions for two years. Then she told her doctor she was done with doctors, hospitals, and treatment.
Living with her invisible illness
Six years have passed since she started treatment. It has been three years since she stopped scans and appointments. Her original prognosis was five years, 10 with the trial. She is now in year six. Her cancer is currently dormant, a word many with incurable disease prefer over “remission.” She will never be without her lymphoma, and she will never be her old self again.
Her hair, eyebrows, and lashes have grown back. Her skin no longer peels. The boils on her face and head are gone. But what people do not see haunts her daily. She suffers from exhaustion so severe that she naps almost every day. This is not normal tiredness; it is a slack-jaw, need-to-sleep-now fatigue that overrides everything else. Because of this, she struggles to maintain a normal work life. She needs a sofa in her office or access to a nursing room to lie down. Recently she has needed to work from home to sleep during her lunch hour. Her social life ends before 7 p.m.
Chronic joint pain results from the trial drug. At times she needs walking aids due to pain and inflammation. She has also dealt with balance issues and attended rehab for them. Chemo brain, a fog that has stayed with her for years, clouds her short-term memory and scrambles her words. Simple tasks like grocery shopping or talking to people can feel overwhelming.
Anxiety, PTSD, and survivor’s guilt cling to her like a shadow. Anxiety is the largest. Her body betrayed her once; she fears it will do so again. PTSD did not surface until she reached the five-year mark, when she learned that nearly everyone else in her trial had either died or relapsed. She hyper-panics over every minor symptom, wondering if the disease has returned. Survivor’s guilt is the most confusing. She works full-time and never needed disability, while many in her position did. She has not relapsed, when nearly all have. She remains highly functional, while many have died. On the outside, she is doing well. Inside, she feels like a disaster.
How she is coping
Early in her diagnosis, Wolters realized she needed to find a way to cope or she would drive herself mad waiting for relapse or death. She had to forgive people who did not know how to support her. She learned to give space to those who forgot she was still fighting or who complained about trivial issues. Finding grace was essential to moving forward.
She built a support system of like-minded cancer survivors, especially others with her same diagnosis. Doctors treat the cancer, but patients must figure out how to pick up the pieces of a shattered life. No one understands her pain and fear better than another MCL patient.
Finally, she replaced thoughts of who she was with thoughts of who she is becoming. She is, by all accounts, becoming a better version of herself. She has learned to lean into her down days and allow herself to rest without guilt.
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