Mona Mathis passed away in June of non-Hodgkin's lymphoma. Her husband of 45 years, William Mathis, is grieving, but he'd like to do more.
Mr. Mathis is contacting lots of folks, from Oprah Winfrey to his little neighborhood Shoppe Talk, trying to get the word out about the disease and to interest as many people as he can in supporting research for better ways to diagnose it.
"Mona turned 65 March 24 this year. She was a wonderful person, very outgoing. She always had a smile for everybody," Bill said. "I've lived in Hillcrest since 1971. I pick up Shoppe Talk in the Buice Drug Store. My voice is not very big, but if we could get other people interested, maybe we could get early detection. If we could save just one person, she'd like that.
"Dr. Sneed, an oncologist, when she was in St. Vincent Hospital, he looked at the chart, and he said, I feel Mrs. Mathis has probably had this for 10 or 15 years.
"Mona had 10 different physicals, two back surgeries, and two knee replacements. All the time, it was lying there dormant. Every year, Mona went and had a physical and a mammogram. She had a colonoscopy, part of the process after you get 50 years old.
"I'm not mad at nobody, but why can't we get some early detection for this deadly disease?"
Dr. Thomas Sneed, a medical oncologist who saw Mona at rounds at the hospital, said the stumbling block for early detection is that non-Hodgkin's lymphoma is not one disease, but many.
Non-Hodgkin's lymphoma is cancer that arises in the lymph system and includes many types of lymphomas with different characteristics.
"It is 30 or 40 different diseases," Dr. Sneed said in a telephone interview. "There are about 36 kinds of non-Hodgkin lymphoma. Some are slow-growing. Some are aggressive. Since there are approximately 36 kinds of lymphoma, it's not the sort of thing you screen for.
"It is absolutely treatable, one of the most treatable cancers."
Bill said that Dr. Sneed explained that the type of cancer Mona had could be put into remission, but could not be cured. "Dr. Sneed is a fine person. He would come up to Mona's room, sit on the side of the bed and talk with her at length and explain everything in detail. He was very courteous, very kind."
Dr. Sneed said Mona had follicular lymphoma, an "indolent," slow-growing lymphoma. This is one of the kinds of lymphomas that are generally not curable. On the other hand, aggressive large-cell non-Hodgkin's lymphomas are "quite curable" with radiation or chemotherapy, with long-term survival depending on age, the stage of the disease, and how far it has spread.
"Indolent is usually discovered accidentally, with (an) abnormality in the blood count, or the platelets are low."
Dr. Sneed said he didn't know how long Mona had follicular lymphoma. "Typically, people live for many years with it. This was apparently the case with Mrs. Mathis."
Mona was diagnosed September 2005 by Dr. Joseph Beck, a board-certified oncologist who has practiced in Little Rock for 20 years.
"He told us it was a low-grade, slow-growing, non-Hodgkin's form of lymphoma," Bill said. Her course of treatment began with a milder form of chemotherapy that she underwent until January. "Then they scanned her. He said this stuff has gone crazy ... and they had to use a hard, aggressive chemo. It was really hard on her. She got worse."
Dr. Beck said follicular lymphoma has "gotten more common over the years. We're not sure why. It is more common in people who are older.
"It's hard to diagnose," he said.
Lymphomas are easier to detect when they are the type that cause swelling of the lymph nodes in the underarms or the neck, he said. "Deep in the body like hers was, then it's harder to find."
Right now, the only way to diagnose the cancer is by biopsy - a painful, invasive procedure physicians would not recommend unless symptoms or tests suggest a necessity.
Dr. Beck said symptoms of non-Hodgkins lymphoma may include unexplained fever, weight loss or night sweats.
"Night sweats is not just the back of the neck being damp. You soak bedclothes and have to get up and change clothes. If you'd been through menopause 10 years ago and everything is fine and all of the sudden you're having these night sweats, that would be something to check out."
In addition, "any kind of swelling out of the ordinary should be investigated. Pay attention to your body, and pay attention to things that are different."
Chemotherapy and radiation therapy are options for aggressive lymphomas. "If it is very slow-growing, if a person is elderly, we might just observe a person. It's possible to have and live years and years and years."
Bill said Mona never really noticed any symptoms of disease.
"She didn't have a whole lot of energy. But she had been anemic all of her life. She went to get some shots of B12. She tried to change her diet and eat some food with more nutrition, to give her a boost. She'd lost some weight, but she'd gotten so depressed. She was scared.
"She never complained about it really, and she didn't know anything was wrong."
Information from medical sites on the Web urges individuals to see a physician if they have unexplained fever, night sweats, unexplained weight loss, constant fatigue, or itchy or red patches on the skin. These are the symptoms of many ailments, but check with your physician to be sure. Do not wait to feel pain, because early non-Hodgkin's lymphoma may not cause pain.
In addition, the incidence of non-Hodgkin's lymphoma has nearly doubled over the last 55 years, they said. Dr. Beck said it is uncertain if this is a true increase, or the result of better reporting.
It is the fifth or sixth most common type of cancer, depending on your source of information.
A number of websites said risk factors associated with the disease are age, sex (more common in men), a weakened immune system, viruses (Epstein-Barr, for example), and exposure to environmental toxins, such as pesticides, solvents and fertilizers. Some studies point to specific ingredients in herbicides and pesticides, such as organochlorine, organophosphate, and phenoxyacid compounds. Often there is simply no explanation for its occurrence.
If your doctor suspects non-Hodgkin's lymphoma, he may order blood tests or internal scans, such as x-rays, CT scans, PET scans, MRIs, lymphangiograms, or a gallium metal scan.
Although no special tests are available today that can find non-Hodgkin's lymphoma early, Bill hopes that will change when more people become interested in the disease.
"Mona was a lovely person. She fought this with everything she had, but it was just too big. I just want to make people aware."
(This story was written by Bobbi Nesbitt and ran in the September 2006 edition of Shoppe Talk.)
Mathis Spearheads State's First Lymphoma Research Foundation Chapter
Shoppe Talk readers may recall a story that ran last September about Mona Mathis, who passed away in June of 2006 of non-Hodgkin's lymphoma. She was the beloved wife of 45 years of Bill Mathis, who wanted to do something to honor her, to help other Arkansans diagnosed with these types of cancers, and to fund research to improve early detection.
After months of what Janet Breen called "putting his grief into action," Mr. Mathis succeeded in the establishment of the first chapter in Arkansas of the Lymphoma Research Foundation.
Mrs. Breen was one of the folks who attended the first meeting that led to the chapter's founding.
Other founding members are her husband, John Breen, Earlene McDonald, Emma Ward, Mary Ann and Milton Foerste, Julie Kerr, Sandy Grayson, and, of course, Bill. Also in attendance were: Harold Dean, a clinical social worker for the Arkansas Cancer Research Center; Suzanne Bliss of New York City, president of the Lymphoma Research Foundation; Sally Fleming of Atlanta, director of chapter services for the foundation; and Bobbi Nesbitt, publisher of Shoppe Talk. The meeting room and refreshments were provided by ACRC.
"Bill, a real thank you," Ms. Bliss said. "It really does take one person in a community to get something organized."
"I'd like to say a big thank you to Bill too," Ms. McDonald said. "I am a lymphoma survivor. When I was first diagnosed, I didn't know where to turn. It's an experience you don't want to go through alone. To everyone here, I'm glad to be here."
Mr. Foerste said he had been diagnosed in 2004, had completed his treatments and is in remission. Milton said searching the Internet for information had been depressing. One of the services the foundation offers is a support system, where people can be paired with a "buddy" in their area.
Ms. Ward said she and her husband see Bill every day. (Bill said they'd "kind of adopted" him.) "We knew and loved Mona. Mona was a lovely person. We want to be here to support him as well," Emma said.
At the founding meeting: Suzanne Bliss, Bill Mathis, Julie Kerr, Sandy Grayson, Sally Fleming, Janet Breen, John Breen, Earlene McDonald, Mary Ann Foerste, Milton Foreste, Harold Dean, and (not pictured) Emma Ward. Photo By Bobbi Nesbitt
Suzanne explained that the foundation is relatively new, having been established in 2001 by the merger of the Cure for Lymphoma Foundation and the Lymphoma Research Foundation of America. LRFA was founded in Los Angeles in 1991 by Ellen Glesby Cohen, who died of lymphoma in 2000. CFL was founded in New York City in 1994 by Jerry Freundlich, a 14-year survivor of non-Hodgkin's lymphoma, and his wife, Barbara.
Suzanne said the foundation has funded 34.7 million in research so far. Out of every dollar raised, 85 cents goes into research and education, she said. The foundation has the highest rating from Charity Navigator for sound fiscal management. It has a 45-member volunteer scientific advisory board that meets twice a year.
Ms. Fleming said the foundation has more than 20 active chapters that distribute literature to local doctors' offices and raise money for research and education.
Part of that money funds an 800 number for patient services that people can call as often as they choose.
The Arkansas group has had two more meetings since that initial one at ACRC. Bill was elected president of the chapter, and Ms. Kerr was elected recording secretary.
Bill is very pleased with the progress in establishing the chapter.
"I feel good about it," he said. "I'm just surprised someone hadn't done this before. I'm certain a lot of people in the state of Arkansas have died of lymphoma."
Lymphoma is the most common blood cancer and the third most common cancer of childhood. Mona died of non-Hodgkin's lymphoma, a cancer of which there are about 36 different types, each a different disease, which makes research challenging. Some of the cancers are slow growing, some agressive; some are curable, some are not; some are easily detected, others, not.
The incidence of non-Hodgkin's lymphoma has nearly doubled over the last 55 years. It is the fifth or sixth most common type of cancer, depending on your source of information.
Risk factors that have been associated with it include age, sex (more common in men), a weakened immune system, viruses (Epstein-Barr, for example), and exposure to environmental toxins, such as pesticides, solvents, and fertilizers. Some studies point to specific ingredients in herbicides and pesticides, such as organochlorine, organophosphate, and phenoxyacid compounds. Often there is simply no explaination for its occurrence.
Bill had been shocked when one of Mona's physicians told himn she may have had non-Hodgkin's lymphoma for 10 to 15 years. That is one of the reasons he wants to help raise money for research.
"I'm going to raise some money to get research to find an earlier way to detect this."
And for education. "When Mona got so bad, there was no one to talk with about this. There were no brochures." The Arkansas Chapter of the foundation will remedy that, he said.
Bill said that in trying to form the chapter, he'd encountered people all along the way who encouraged him. "Everybody has wanted to help and do what they can do."
Do what you can do. If you would like to attend monthly chapter meetings, which are held at Second Presbyterian Church in Pleasant Valley, call Bill at 501-580-8932.
(This story was written by Bobbi Nesbitt and ran in the June 2007 edition of Shoppe Talk. On February 29, 2008, Arkansas Governor Mike Beebe proclaimed March 24, Mona's birthday, to be Eradicate Lymphoma Day In Arkansas.)
No comments:
Post a Comment