Living Well with Multiple Myeloma: Malcolm’s Palliative Care StoryAugust, 2015
Malcolm White loves the Philadelphia Eagles and socializing with his friends. But when the 51 year-old was diagnosed with Multiple Myeloma, he experienced so much pain that it became hard to focus on anything else.
“It started out gradually with, you know, pain and stiffness in the back, which gradually got worse where it became really hard to move around,” he explained. “It started early, at the beginning of this year and it got progressively worse to where I saw a doctor and had some X-rays and they ran some tests and that’s when I was diagnosed.”
As his disease worsened, Malcolm’s quality of life continued to deteriorate. Eventually, he could no longer visit with family and friends, and he ultimately had to leave his job as a bus driver. “It was really hard just getting dressed every day, getting out of bed, you know going to the bathroom,” he recalled. “All of that, it affects you, you know, your whole life.”
According to the Multiple Myeloma Research Foundation, more than 77,000 people are living with Multiple Myeloma, a form of blood cancer. The American Cancer Society estimates that more than 26,000 people will be diagnosed with Multiple Myeloma this year. For people like Malcolm who are living with Multiple Myeloma, the symptoms that accompany the disease, most notably the pain, can be overwhelming.
That’s where palliative care comes in. Palliative care is specialized medicine for people with serious illness. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family.
Dr. Arthur Siegel, a member of Malcolm’s palliative care team, recalled Malcolm’s state when he was first referred to palliative care. “When I saw him, he was curled up in a ball. He was very tight. He couldn’t move because of the pain, couldn’t really get out of bed without hurting.”
But pain is more than a physical sensation. For Malcolm, like many patients, the pain that accompanied his disease negatively affected other aspects of his life. “If the pain is so severe that you need to be in the hospital, it means that you’re not going to be sleeping all that well,” explained Dr. Siegel. “You’re not going to want to eat because it hurts just to move, even to get food. It sometimes hurts to breathe and you just feel like ignoring the rest of the world.”
Malcolm’s palliative care team included Dr. Siegel, a nurse practitioner and a social worker. They immediately sat down with Malcolm to begin managing his pain and improve his overall quality of life, including his emotional well-being.
“Those symptoms that go along with pain mirror symptoms that go along with depression, and so they can go hand in hand,” explained Dr. Siegel. “Patients with chronic pain frequently get depressed or have depression.”
That’s why the multi-disciplinary nature of palliative care is so important. Team members from various disciplines work together to treat all symptoms collectively and to support the whole person. “Everybody played their part as far as my progress, through the team of doctors, the nurse practitioners, the social workers,” Malcolm said. “Everybody had a role.”
Soon, Malcolm’s pain began to subside, which he credits to palliative care. He is now and able to get around and is regaining weight and his appetite. “Things have definitely gotten better compared to a few months ago,” he said.
And now? He is back to focusing on what matters most to him: spending time with loved ones.
“I did attend a family reunion recently and have gotten together with some people, so yeah. It’s easier for me to get with people than it had been,” Malcolm noted. “The palliative care definitely helped.”
For palliative care physicians like Dr. Siegel, that’s music to his ears.”That’s what being a doctor is all about, is helping people feel better and live their lives. And palliative care allows patients to do just that.”