YOUNGSTOWN For nurse, disease battle is personal

Donna Detwiler is lobbying on behalf of fellow multiple myeloma patients.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
YOUNGSTOWN -- Donna Detwiler is familiar with helping people cope with life-threatening and sometimes rare diseases.
She has worked 30 years as a registered nurse, 15 of which were with children with cancer and other blood disorders.
Then, in February of this year, she was diagnosed with multiple myeloma, a rare cancer (1 percent of all malignancies) of the bone marrow, which causes bone destruction, kidney failure and anemia.
Even with her extensive knowledge and experience, she said it was "devastating. When it happens to you, your world comes to a screeching halt for a while. Then as you begin to come to grips with your diagnosis, you put your faith in the Lord and realize that he has a plan for you, and you face your illness head-on."
"It is so very important to educate yourself about your illness, so that you can make informed treatment decisions. Multiple myeloma is not curable, but it is treatable at this time," she said.
Lobbying lawmakers
Part of her personal program of fighting her disease was to get involved in making others aware of it, including legislators in Washington, D.C.
She joined the Multiple Myeloma Research Foundation, a national group that promotes awareness of the disease. She is one of about 40 patients and family members from around the country chosen to go to Washington June 17-18 to lobby legislators for continued financial support of multiple myeloma research, expedited drug reviews with the Federal Drug Administration, and continued funding of blood-cancer research.
Detwiler, a precertification nurse at Forum Health who previously worked in oncology there, also worked for an area pediatrician for several years.
"I helped many families through many difficult times. That knowledge is good for me now because I can better understand what's going on with me and make informed decisions on what I can do. I got involved in the multiple myeloma association to keep myself informed and to help others," she said.
She said the Washington trip will let her network with the group, see government in action, and learn more about her disease and any new medicines that have become available.
Her status
Detwiler said she is what is known as a "smoldering myeloma," which in her case means her protein level is elevated but she does not have other symptoms. As a result, she is taking medication intravenously once a month to strengthen her bones, and she gets blood work and is monitored every two months.
"For someone in my age bracket, if I develop symptoms, a peripheral bone marrow transplant may be necessary," she said.
Detwiler, 50, of Poland, and her husband, Jerry, have four adult children and two grandchildren. She is a 1970 graduate of Youngstown Ursuline High School and received her RN from St. Elizabeth Hospital School of Nursing in 1973.
Detwiler says she and her family deal with her illness on a day-to-day basis and live life to the fullest. "You learn to appreciate every day as a gift. You can choose to live your life in despair, or you can go forward. You have to deal with it as a chronic illness, and stay focused and positive and be as informed as you can."