This article was originally published in UKNow.
Facing a cancer diagnosis under normal circumstances can be devastating. Facing a cancer diagnosis in the era of COVID, for many, is an isolating and traumatic experience beyond what any of us can imagine.
Lexington resident Mary Miller remembers sitting in shock after hearing those three dreaded words – ‘You have cancer.’
“It is so scary and, in my case, so unexpected,” Miller said. Her symptoms were mild and manageable – anemia and some shortness of breath. Overall, she felt healthy.
“My primary care physician ordered some blood tests,” Mary said. “When I went back, a resident came in first and told me, ‘I think you either have multiple myeloma or lymphoma.’ I said, ‘What?! No! I feel fine.’”
Miller first learned she had cancer in August 2020. It would be a few more weeks before she had an official diagnosis – Waldenstrom macroglobulinemia, a rare type of non-Hodgkin lymphoma – and a treatment plan in place under the guidance of her UK Markey Cancer Center oncologist Gregory Monohan, M.D.
Armed with information overload about a disease she could barely pronounce, Miller did what she does best – hit the books.
A former librarian at the William T. Young Library on UK’s campus, Miller knew how and where to research. She burned the candle at both ends learning everything she could about lymphoma.
“As it turns out, I have a very rare type of blood cancer,” Miller said. “Lymphoma is not common, and I have a very, very rare kind of lymphoma. They estimate something like 1,500 cases a year are diagnosed in the United States.”
Waldenstrom macroglobulinemia (WM) is generally treatable, but not curable. The cancer cells make up an abnormal protein, which builds up in the body and can cause symptoms like excess bleeding, vision and nervous system problems. WM cells crowd the bone marrow, which can lead to anemia, or low levels of red blood cells.
Miller’s chemotherapy regimen started in January 2021 and ended in July. The drugs wiped out her immune system, and she was hospitalized with diverticulitis shortly after she finished her last round of treatment. In September, she contracted COVID-19, which put her back in the hospital for several days.
And her COVID journey did not end there. A few weeks later, she started to experience symptoms of long COVID, running a fever for nearly a month straight. She was in and out of the UK Albert B. Chandler Hospital Emergency Department and ultimately received a monoclonal antibody treatment, which helped turn things around.
“You can imagine the stress at that point. Not only was my body going through it, but my mental health was taking a hit, too,” Miller said. “In addition to the physical symptoms of a COVID infection, the isolation you experience having to be more careful than most people because of my immunocompromised state – it can become overwhelming.”
Dealing with a difficult diagnosis is something Miller has experienced before. Her mother was diagnosed with Parkinson’s disease and struggled with depression and anxiety.
“I know how a depressed mental state can make dealing with a chronic illness so much worse,” she said. “My mom would feel so down that she couldn’t initiate much of anything. We had trouble getting her to do her exercises, much less get out of the house. I was going to make sure that this did not happen to me. I was determined.”
Finding counseling services was at the top of Miller’s to-do list.
“I really wanted someone who works with cancer patients because when you talk with them about different situations, they understand,” Miller said. “They know about immunosuppression. They know about all the other things that go along with cancer. Another counselor may know some aspects, but not to the depth and nuance that someone who works exclusively with cancer patients would know.”
Luckily for Miller, and all other UK Markey Cancer Center patients, there is a group of professionals specially trained to help.
The UK Markey Cancer Center’s Psych-Oncology Program includes a comprehensive support network to walk alongside patients and caregivers alike during a challenging cancer journey.
The team helps those affected by this disease manage the physical, emotional, spiritual and practical hurdles that patients can encounter after a diagnosis. Research shows that hospital patients who receive counseling and support for psychosocial distress have reduced hospitalizations, length of stays, physician visits, emergency department visits, and prescriptions.
“We are a niche group within UK HealthCare and our mission is to be with patients and their caregivers every step of the way throughout their continuum of care,” said Joan Scales, supervisor of Markey’s Psych-Oncology program. “We are here to address all of those ‘side effects’ of a cancer diagnosis that people don’t often consider. Patient barriers like transportation and lodging challenges, financial barriers, emotional and mental support – anything you can think of, our team is here to help.”
The office has seen a 235% growth in counseling services since the inception of the counseling program. The psych-oncology team includes two dietitians, 11 social workers and one patient services coordinator. Each member plays a vital role in the program’s success.
Miller believes it’s the small things that make a big difference. Whether it’s a phone call to talk on a hard day or help with more practical matters, she says Scales is always there.
“It is tough going through this, and while you can talk to friends and family, they don’t always get it. And there are other times that it just feels like your friends don’t want to really hear the nitty-gritty, the bad stuff,” Miller said. “To have somebody you can call any time and lay that out makes a big difference.”
It may not always be an easy job, but Scales said the work is rewarding.
“This job means so much to every single person who puts in the hours to make a difference in our patients’ lives,” Scales said. “Our patients become our family and we take great pride in helping them through this challenging journey.”
While the Psych-Oncology Program is unique to Markey, social workers are deeply ingrained in every aspect of health care. Currently, there are nearly 120 social workers within the UK HealthCare enterprise.
However, there is a shortage of practitioners nationwide, which makes the future of social work in the medical field troubling.
According to a 2016 report by the Health Resources and Services Administration’s (HRSA) National Center for Health Workforce Analysis, the shortage of mental, behavioral and health care social workers is slated to run through — at least — 2025.
In response to these troubling statistics, Gov. Andy Beshear announced a comprehensive plan to recruit and retain social workers for state agencies.
Meanwhile, the UK College of Social Work is also working diligently to be part of the solution.
The college has deployed a number of strategies to address workforce issues, including online programming, a streamlined curriculum and a variety of certification offerings. For UK College of Social Work Dean Jay Miller, incorporating social workers into the patient care experience is vital to providing the best health care.
“Far too often we don’t think of all the complexities that go into providing adept health care services. To be clear, it is impossible to envision a meaningful health care system without acknowledging the instrumental role those social workers have in that system,” said Miller. “Be it ensuring access, providing clinical services, or engaging in research and policy advocacy, social workers are at the forefront in ensuring a comprehensive health care system for all.”
An estimated 30,270 Kentucky residents will learn they have cancer this year. Miller hopes patients and their caregivers know they are not alone and seek help when they need it.
“Your physical symptoms are a lot easier to handle if you have a positive attitude,” Miller said. “It is hard to put a cheerful face on this disease, but it is good to have someone with whom you don’t feel like you need to always have a cheerful face. You can say the way it really is.”
The Markey psych-oncology team is easily accessible. Patients can request a consult through their physician or call 859-323-2798 for a consult.