A woman in her 40s who was at the peak of physical fitness received a rare and incurable cancer diagnosis. Lynda Wolters, originally an avid ballroom dancer, hiker, rafter and horse rider, now lives with Mantle Cell Lymphoma, a non-Hodgkin’s lymphoma subtype that affects only 5 percent of all non-Hodgkin’s lymphoma diagnoses.
Wolters first noticed something was wrong when she developed a sensitive stomach. Spicy foods, red meat, dairy, wheat, nuts, certain raw vegetables and anything with preservatives, additives or coloring caused severe bloating, pain and diarrhea. Her periods became erratic and her heart began to race. A diagnosis of hypothyroidism led to a daily pill, but the problems continued. She lost weight dramatically. Her stomach intolerance worsened into nausea and loss of appetite. At one point she could only eat a few bites of organic chicken, apples, blueberries, oats and green leaf lettuce.
She initially sought minimal traditional medical care. Wolters said she was never a big fan of Western medicine and refused any medication other than the thyroid pill. She saw her physician for yearly exams and mammograms but otherwise preferred natural approaches.
Then one day in the shower she noticed a chain of lymph nodes bulging out of the side of her neck. By that time she weighed just over 100 pounds, could no longer exercise and could barely keep her eyes open from fatigue. In the following months she was diagnosed with rare, incurable stage 4 Mantle Cell Lymphoma.
Blood cancers fall into three categories: leukemia, Hodgkin’s lymphoma and non-Hodgkin’s lymphoma. MCL is a non-Hodgkin’s lymphoma. Among the 60 subtypes, MCL patients make up only 5 percent of all non-Hodgkin’s lymphoma 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.
Treatment and clinical trial
During her first year of treatment, Wolters commuted 1,800 miles one way to MD Anderson Cancer Center in Houston, Texas. She was accepted into a clinical trial that could potentially extend her life to 10 years instead of five. Her local oncologist encouraged this path, saying she was too young and her case too rare for the standard of care. The clinical trial accepted 160 patients. Wolters was number 132.
After nearly a year of sometimes weekly back-and-forth trips to Houston, she entered inpatient chemotherapy. She spent between five and six days in the hospital for each round of treatment. Following chemo, she had maintenance infusions for two years. After that, she told her doctor she was done with doctors, hospitals and treatment.
Living with an invisible illness
It has been six years since Wolters started treatment and three years since she stopped scans and appointments. Her original prognosis was five years, 10 with the trial. As far as she knows, her cancer is currently dormant. Many people with incurable diseases prefer the word “dormant” over “remission,” because remission is often mistaken for cure. She currently has no outward signs of the disease.
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 is what haunts her daily. She experiences exhaustion so great that she naps almost daily. This fatigue surpasses work, play, family and entertainment. She has difficulty maintaining a normal work life. She needs a sofa in her office or access to a nursing room to lie down, or the ability to work from home to sleep during lunch. Her social life does not exist past 7 p.m.
She has chronic joint pain from the effects of the trial drug. Sometimes she needs walking aids due to pain and inflammation. She has also experienced issues with balance and went to rehab to work on them. Chemo brain, a fog that has lived with her for years, clouds her short-term memory and scrambles her words. The simplest tasks, such as grocery shopping or interacting with people, often feel overwhelming.
Anxiety, PTSD and survivor’s guilt are attached to her like a shadow. Anxiety is the largest of the three. She said her body has betrayed her once and will surely do it again. The realization that she has PTSD did not surface until she reached her five-year mark and learned that nearly every other person on the trial with her had either died or relapsed. She now hyper-panics over everything, sure that each hangnail, bruise or hiccup signals the disease’s return.
Survivor’s guilt is the most complex and confusing. Most people do not understand why she would feel guilty for still being alive and thriving. MCL is so harsh it is one of only a few cancers on the list of compassion disabilities that allows for disability benefits. But Wolters still works a full-time job and never required disability, whereas many others did. She has not relapsed, whereas nearly all have. She is still highly functioning, whereas many have died.
How she copes
Early in her diagnosis, Wolters realized she needed to find a way to cope or she would drive herself mad in anticipation of relapse and death. She had to find the grace to forgive people who did not know how to stand by her. She had to give a wide berth to those who look at her and forget she is still fighting, who forget she was or is still unwell, and who complain about seemingly trivial issues.
She then realized a strong support system of like-minded people, cancer thrivers especially those with the same diagnosis, was essential for her continued positive mental health. The doctors treat the cancer, but the patient is left to figure out how to pick up the pieces of a shattered life. She said no one understands her pain and racing thoughts of fear and anxiety better than another MCL patient.
Finally, she needed to replace her thoughts from who she was to who she is becoming. She said she is becoming a better version of herself. She has learned to lean into her down days and allow herself to feel what she needs to feel.
