Living well with serious illness: Marion B’s palliative care story
Marion Blankenship of Charlotte, North Carolina lights up when she talks about her family, especially her eight grandchildren. She beams with pride when you ask her about her job working with kids at a childcare development center. And, she smiles ear to ear when she talks about her hobbies, like singing in church, cooking, or exercising at her local YMCA.
“I love staying busy,” says Marion. “I get a kick out of trying something new and having fun.”
In 2014, Marion’s diagnosis of stage IV breast cancer and the pain and depression that followed were keeping her from the things she loved doing. It was taking Marion away from who she was.
“By the time they discovered my cancer, it had spread to my spine. The pain was terrible. Emotionally, I was in a state of shock and also felt remorse because I hadn’t been very proactive with my health by going for my routine mammograms like they say to do,” says Marion.
Marion worked with her oncologist to treat her cancer through radiation and targeted drug therapy. Although the treatment was helping, she felt that she needed more help to deal with the difficult pain she felt in her lower back. This caused fatigue and kept her from doing normal tasks. She also couldn’t shake the feelings of depression. Eventually, Marion’s oncologist referred her to palliative care.
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Getting started with palliative care
For all patients facing serious illness, palliative care specialists begin with what’s call the “initial consult.” That’s when the patient and their family members meet the full palliative care team. The team asks questions not just about the illness or the treatment for the illness, but about the what makes the patient who they are.
“The importance of what we do, ultimately, comes down to us listening to the patient. If you look at the big picture, a lot of it comes down to them sharing their stories with us so that we can better understand where they’re coming from, where they are, and where they’re going,” says Dr. Boris Krivitsky, Marion’s palliative care doctor.
In her first palliative care visit, Marion met Dr. Krivitsky as well as the entire palliative care team at the Levine Cancer Institute in Charlotte. Dr. Krivitsky’s team sees over 2,000 patients a year as they deal with various illnesses. He says it all comes down to building a real relationship with each patient.
“I try to learn about them. I listen to their story as much as they’re willing to share, and that typically leads to a lot of sharing that they’ve really never done before with any other clinician. It can become very emotional, and by default, that creates an emotional connection between the clinician and the patient, which hopefully leads to a better understanding of the human aspect of their suffering and their journey,” says Dr. Krivitsky.
Managing the pain
To help Marion on her journey, Dr. Krivitsky and his team helped get her on a pain management schedule. Because one of her goals is to remain active during the day so she can take care of her grandchildren or attend church events, the palliative care team has helped her create a plan: She takes a larger dose of pain medication at night to help her sleep. During the day however, she takes less medication so that she can avoid the side effects and stay busy.
“To me, the most important aspect of medical care is not diagnosis or even treatment options. For me, it’s always answering the question, ‘What is it that we can do to help a patient achieve their goals?’ says Dr. Krivitsky “Without understanding and listening to what their goals are, it’s really impossible to answer that question.”
Tackling the depression
With a better pain management plan in place, Marion began to work on the stress and anxiety. For Dr. Krivitsky, this aspect of palliative care is essential.
“Obviously, I want their physical symptoms to be addressed because without that, the conversations about mental strength and coping strategies are very difficult to have if someone’s pain or insomnia is not well controlled.”
Marion and her daughters also met regularly with the palliative care team’s social worker to talk through the difficult mental hurdles she faced when preparing to start a round of radiation or chemotherapy. They worked through Marion’s feelings of regret and eventually began speaking more about the present and the future. Sometimes, they would simply speak about what it’s like to live with cancer. Once again, the priority became about setting goals for the future and living for the moment. This included accomplishing small things like attending an event or something bigger like traveling for a vacation.
“I feel like now, since I began seeing palliative care, I am much more aware of living purposefully, of spending my time doing things that mean something,” says Marion.
Marion continues to receive palliative care as well as treatment for her cancer. She remains active in her community and keeps a full dance card. Just recently, at a friend’s backyard party, she tried something she never imagined she would: zip-lining. She laughs when recalling the moment.
“I walked up a platform, and then I zipped all the way across their yard. I just had to do it. I thought to myself, I know I can do this. And then, I just held on really well and did it!”
For Marion, the zip-line incident meant more to her than just a fun thing to do. It was a symbol of how far she has come.
“Being close to three years into this, I am amazed that I am doing as well as I am. Really, once I got adjusted to the idea of this illness, and accepted it and digested it, I think I’ve honestly felt stronger mentally than I had felt before I was diagnosed. Palliative care gave me that strength,” she says.
Dr. Krivitsky says Marion’s story is why he entered into the palliative care profession in the first place. In 2014, he met Marion when she was at her lowest point, and today he is able to tell a different story.
“There’s a questionnaire we use when we first meet a patient where the patient grades his or her well being from zero to ten with zero being best, and ten being the worst. When we first met Marion, she graded her well-being at a seven. Last time I saw her, she graded herself as a one. The difference is very obvious,” says Dr. Krivitsky.
Are you or a loved on dealing with breast cancer? Find out more about how palliative care can help by clicking here. Remember, you don’t have to wait to receive palliative care. You can have it right from diagnosis.