Gail G. McCray is a health care professional whose job is teaching community health education. So, it’s not surprising that when it came to her own health issues, she knew exactly where to go to get information. Or that she continues to stay informed so that she can be a partner with her health care providers in making health care decisions.
What is surprising is that she was not good about going to her primary care doctor for regular visits. But, since she was diagnosed in 2008 with multiple myeloma, the second most common blood cancer (after leukemia), all that has changed. She is not only seeing her doctors regularly, she is working with Multiple Myeloma organizations to help educate primary care doctors about the disease so that they can diagnose the disorder in its early stages.
But she didn’t do it alone. She had the proactive support of her older sister, Paulette McCray Neely, who teamed up with her to fight the disease. It started in 2008, when Gail was having severe lower back pain, and carefully noting over several months in her calendar a new and different and progressive pain. Though it started in March, she waited until June when the pain had gotten worse to make contact with her primary care doctor. He did the usual blood and urine tests and ordered X-rays and an MRI. When he ordered a test she had never heard of – protein electrophoresis – she knew it was serious. Her research quickly turned up a tie to multiple myeloma. “I had too much protein in my blood – and too much calcium.”
Her sister joined her on the next visit, to the hematologist and oncologist at the Winship Cancer Institute at Emory, where her multiple myeloma diagnosis was confirmed in July 2008. And it was a good thing she did. “I heard about every third word,” Gail said, “When I heard kidney failure and transplant, I somehow put that together and thought I might need a kidney transplant.” Multiple myeloma has sometimes been diagnosed using the CRAB criteria – Calcium, Renal (kidney) function, Anemia, and Bone lesion.
But, her sister was taking copious notes, and the doctor told her it was a stem cell transplant that she was facing. At that time, she knew very little about stem cell transplants. She had three rounds of chemotherapy from July through October. The doctors were able to harvest her own cells in November to do an autologous stem cell transplant in December 2008, In May 2009, she was classified as having “near complete” remission. Still, she maintained regular follow-up appointments and knew that her bones were being impacted: she had lost three to four inches in height, going from 5-foot 7-inches to 5-foot 4-inches.
Gail enjoyed almost seven years of remission before a relapse in 2016. In those seven years, however, much progress had been made in the treatment of multiple myeloma. She knows because she and her sister are very involved in the Atlanta Southside Multiple Myeloma Support group, the International Myeloma Foundation, the Leukemia and Lymphoma Society – attending in person presentations and webinars with myeloma specialists as often as possible.
“I am not a joiner and I would not have gone to a support group,” she says. “But my sister was worried. She had read that survival rates were 3 to 5 years, and she wanted to learn more. She met one survivor who had been diagnosed in 1989 – almost 20 years. So, it was there that she found hope. And she assured me that the meetings were not complaint sessions, so I started attending as well,” she says.
And she’s so glad she did. She always learns something new. There’s a lot of discussion about the differences in how multiple myeloma impacts patients, about smoldering and MGUS (always new terms), about the high cost of medications and people share information on financial resources to help cover the cost. By the time of her recurrence, she had already been learning about the new oral medications that were available. She had listened to webinars and attended seminars and was following them since they were in clinical trials. She found that multiple myeloma patients were generally very attentive and knowledgeable. “Initially, we are all overwhelmed, but, eventually we can talk intelligently about our disease history, medication and dosages, lab values, and future treatment options with providers.”
So, when it came time to discuss treatment in 2016, Gail and Paulette were “involved in a meaningful way in the decision-making process” with her physicians. They had two or three meetings to discuss the options and develop a plan. “It was truly a team effort,” she says.
Gail knows she was fortunate. She was diagnosed early. She had good insurance. She had her sister’s support. And she was somewhat knowledgeable about resources in the health care community.
And she has some great advice for those who are going through their cancer journey. First, keep track of everything – and keep it organized. She was really impressed that her sister had kept a complete notebook of every test from her first occurrence in 2008. Gail also put notes in her calendar. If she were having symptoms, she would write it down; because she often found that when they went away, she had forgotten.
As an educator, she encourages people not to hide their illness from others. She had never heard of multiple myeloma, so she used her experience to share information with others. She used the staff portal to educate fellow employees about the disease, the treatment, and her cancer journey. She also strongly encourages everyone to have regular visits with their doctors and maintain regular preventive health screenings (breast, colorectal, blood pressure, etc.). There may be no symptoms at all for many illnesses, including myeloma. “Others might be suffering in silence,” she says, “and unexplained back problems are common. If someone can catch the problem before there is organ damage, you are doing them a great service.”
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