Diocesan employee battles non-Hodgkin lymphoma
By Claudia Mathis
SUN staff writer
OSWEGO — More than 894,000 Americans have leukemia, Hodgkin or non-Hodgkin Lymphoma or myeloma. Every four minutes, someone new is diagnosed with blood cancer. Every 10 minutes, someone dies. It’s not known for sure what causes blood cancers, but they are believed to stem from an acquired genetic injury to the DNA of a single cell which becomes malignant. Fifty-four percent of all blood cancers are lymphoma.
Lymphoma is a general term for a group of cancers that originate in the lymphatic system. It occurs when a type of white blood cell called a lymphocyte becomes malignant and begins to multiply more rapidly than normal cells, crowding them out and creating tumors in the lymph nodes or other parts of the body. Lymphomas are the most common blood cancers and incidence increases with age. Non-Hodgkin lymphoma is the sixth most common cancer in the U.S.
In the spring of 2007, Deanne Hall, the diocesan Northern Region Resource Center Coordinator, was diagnosed with non-Hodgkin lymphoma. The diagnosis was made when she was treated for an unrelated health issue. Hall hadn’t experienced any symptoms of the disease, so the news surprised her. When she first heard the news, she said she felt calm. She lost her composure, however, at her first visit with her oncologist. “I fell apart,” said Hall. “I walked into a room filled with individuals, some of whom were attached to IVs, some were skinny and some were wearing scarves. The feeling of devastation doesn’t begin to describe the way I felt. My life, thoughts, dreams and hopes were pulled out from under me. All seemed gone in an instant!”
Hall remembers how a tiny, frail woman wearing a wig told her, “It’s all about your attitude,” and a large, robust man who looked like a motorcyclist, nodded in agreement. “As I reflect back, I can see that this may have been the subconscious beginning of my ‘Resurrection Sunday,’” said Hall.
Hall said she cried 24/7 for weeks and that her strong faith in God helped get her through that difficult time in her life. “Once my eyes were dried I learned to trust in the word and gifts of God — Scripture, prayer, saintly devotions to Mary, St. Anne and Blessed Marianne Cope, prayers of my encouraging family and friends and the volunteers at the Leukemia & Lymphoma Society of Central New York,” said Hall.
Hall said her family and friends have never wavered in giving her the support she needs to face her disease. “They listen to me on my ‘down’ days — that’s the biggest help, next to prayers,” she said. “They also keep me positively grounded and focused on matters at hand.” Her husband Dan has been especially helpful. She remembers taking walks with him at which time he helped her to keep her fears and worries in perspective. Hall also took comfort from and was inspired by the way that three of her personal acquaintances have dealt with their own cancer.
Hall believes that a holistic (physical, emotional and spiritual) approach is the best method to treat an illness and it is one that she utilizes. As far as her physical health is concerned, Hall said she relies on her oncology team of doctors.
To treat her emotional health, Hall spoke with an individual who specializes in treating depression and she also connected with a “lympho-buddy” — a trained volunteer through the Leukemia & Lymphoma Society.
Spiritually, Hall was bolstered from the interactions with the diocesan Religious Education Office staff, the Northern Region catechetical leaders, her LIMEX (Loyola Institute for Ministry) colleagues and alumni as well as a few other ecumenical communities.
“They were very inspirational and encouraging,” said Hall. “All their cards and prayers were conduits for God’s hand in my life.”
Hall’s medical treatment includes intravenously receiving Rituxan, a super-charged antibiotic that attacks harmful bacteria cells, every six months for a two-year period. Hall said the procedure takes approximately five hours and because Rituxan is a monoclonal antibody, it doesn’t affect the body the way chemotherapy and radiation does. One can resume one’s everyday activities as soon as the procedure is finished.
When Hall was first diagnosed with non-Hodgkin lymphoma, she searched for information about the disease and what to expect. She found it at the Leukemia & Lymphoma Society of Central New York. The world’s largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services, the Leukemia & Lymphoma Society (LLS) was founded in 1949. Its mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.
The organization has invested more than $600 million in research, $71.4 million in 2008 alone. Research funded by the agency has led or contributed to advances such as chemotherapy, bone marrow and stem cell transplantation and new, targeted oral therapies such as Gleevec.
The LLS has also provided critical information and support for patients and their families through their Information Resource Center, their website and community-based patient service programs. Over 20,000 advocacy volunteers throughout the U.S. are talking to those responsible for legislation to fund blood cancer research and educational programs.
LLS has developed nearly 480 family support groups at 68 chapters throughout the U.S. and Canada. Groups are guided by two volunteer oncology health professionals and provide information and support and encourage greater communication among patients, families, friends and health care professionals.
LLS also offers financial assistance to those in need of meeting the costs of transportation, drugs and various treatments not covered by insurance.
The organization is now offering a new service, the Co-Pay Assistance Program. It helps patients with many kinds of blood cancers meet their health insurance or Medicare Plan Part B or D premiums or co-payment obligations related to treating their cancer.
First Connection is another service that LLS offers. It is a program that links newly-diagnosed patients to a peer volunteer who has experienced a similar diagnosis. A trained patient-volunteer currently in remission phones (or visits) the new patient to share information and support.
Hall prospered from her involvement in the First Connection program when she met with Colleen Eason of Liverpool, a non-Hodgkin lymphoma survivor. “We connected on a spiritual level,” said Eason. “She asked me to pray for her when I first called her to offer my support. We emailed one another and talked on the phone, sharing our experiences — we‘ve become friends. It’s been a great experience.”
“My ‘buddy’ cheers me up on my ‘down’ days, and hopefully, I do the same for her,” said Hall. “Cancer is a scary word and our imaginations can be even scarier. The people I’ve talked with have helped me to accept the fact that you can still have a functioning, quality lifestyle.”
Hall has made a number of adjustments in her daily life. She said she is praising God more and trying to complain less often. Hall is also giving the time she spends with her family precedence over all other demands on her time.
“I have also become a ‘selective consumer,’” said Hall. “I try to limit my exposure to negative stimulus (depressing people or news), most chemicals (aluminum, pesticides, household cleaners, etc.) and physical exhaustion ( it lowers immunity). Our environment can influence our mind, body and soul and we aren’t always conscious of it.”
Hall also said she tries to make more time for reading Scripture and for spiritual activities.
Hall said that her experience has affected the way she views life. “Things seem more intensified,” she explained. “Roses smell sweeter, my son’s smile is brighter and I value the ‘moment’ more.
“If this experience has taught me anything, it’s been that we all have issues and challenges to deal with,” said Hall. “That’s why it’s so important for people to know about LLS. There are more and more people being diagnosed with various lymphomas or leukemia, including little children. They need to know that there is support and help on levels available to them. I also want those who have been blessed with excess funding or time to know about the agency so that they can donate whatever and however possible. We haven‘t cured cancer yet, but people are learning to live with it, and through the much-needed gifts of others, a cure is possible. People need to know that cancer is a mountain and no one climbs a mountain alone.”