Living Well with Serious Illness: JoAnn’s Non-Hodgkin’s Lymphoma Story
“I wish I could have videotaped JoAnn in her first palliative care session so that she could look back and see how far she has come,” says Mark Curtis, an advanced practice registered nurse and palliative care specialist. Mark has been helping JoAnn—a woman in her sixties—deal with the symptoms and stress of non-Hodgkin’s lymphoma since 2016. Today, JoAnn is well enough to help care for her grandchildren and take part in charity walks, but when she first arrived to meet with Mark, these goals seemed unobtainable.
This is JoAnn’s palliative care story.
JoAnn was diagnosed with non-Hodgkin’s lymphoma—a group of cancers that affect white blood cells which play a role in the immune system—while her daughter was pregnant with triplets. When it was discovered, the cancer had already spread throughout her body.
“I was in a state of shock. Was I going to see the birth of my grandchildren? Was I going to see birthdays? It was just a lot of emotions,” remembers JoAnn.
At the time of diagnosis, JoAnn was already experiencing fatigue. Her oncologist recommended that she start with chemotherapy as a way to reduce the cancer. A combination of the diagnosis, fatigue, and the stress of having to make treatment decisions caused JoAnn to feel depressed and uncertain.
JoAnn’s oncologist recognized that she could benefit from consulting with a group of specialists to help her deal with these issues, and referred her to a palliative care team. Palliative care is specialized medical care for people living with 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 of a serious illness, and it can be provided along with curative treatment.
Making an Informed Decision
At the initial palliative care meeting, Mark and his team asked JoAnn questions like “What typically brings you joy?” and “What’s keeping you from that joy right now?” to understand JoAnn’s goals. Her biggest goal was to play an active role in the triplets’ lives, once born.
“She was worried about the symptoms from chemotherapy, so we began by letting her know what to expect and how we would be able to help,” explains Mark.
Equipped with more information, JoAnn moved forward with the chemotherapy. Fortunately, the treatment had a very positive effect, and showed immediate results in reducing the cancer. It did however increase the fatigue and caused nausea. It also made her feel foggy and forgetful, which is often referred to as “chemo brain.”
To tackle these side effects, Mark and the rest of palliative care team worked with JoAnn’s oncologist to adjust her medication to find the right balance so she could be more active. The team also connected JoAnn with a physical therapist.
“I started to regain control of my days. For a while, I could barely get up in the morning because I felt so sick. But with a more active treatment plan, I started to feel like my old self again – slowly but surely,” says JoAnn.
Tackling the Stress
Mark also helps patients talk through their fears, set realistic goals for the future, and remain determined to handle the bumpy road ahead.
“Luckily in JoAnn’s case, we are dealing with someone who is so willing to do whatever she can to feel better. It’s our job to give her the right tools to improve her well-being every day,” he says.
In addition to long sessions where JoAnn was encouraged to talk through all of the issues troubling her, Mark’s team encouraged her to get out of the house more, and find a purpose to follow every day. JoAnn started volunteering for nonprofit organizations that she cared about, and eventually felt strong enough to participate in charity walks.
Regaining Quality of Life: JoAnn Today
Three years since her diagnosis, JoAnn’s cancer has been reduced significantly. She credits palliative care with helping her regain her quality of life – which includes spending time with her grandchildren and staying active.
“I feel like I have a second chance at life. I feel that this experience has made me a stronger person emotionally, mentally, and physically. Palliative care continues to help me find my way, tackle my pain and stress, and move forward with purpose,” explains JoAnn.
To find out how you or a loved one can benefit from palliative care, visit GetPalliativeCare.org