Living well with serious illness: Kat’s palliative care story
Kat Harrison of Dayton, OH has never been the type to sit around. As a former softball player and as a hard-working professional who often balanced multiple jobs, she has always been on the move. And luckily for her, she’s a frequent babysitter to four rambunctious grandchildren. As a result, she can often be found running around trying to keep things under control. She doesn’t mind.
“Oh my gosh, what isn’t there to like about being a grandmother? You see, being a parent is great, but being a grandparent is even better because you can be there for them and play with them, but then you get to send them back home and get some rest,” says Kat through laughter.
But six years ago, at the age of 41, a sudden diagnosis of ovarian cancer—which had already spread to her pelvis and colon when found—brought Kat’s active life to a screeching halt. She suddenly couldn’t live the life she wanted and even had to quit her job at a donut shop; a job she loved. The pain and stress that followed the diagnosis and treatment left her frustrated and scared. While receiving chemotherapy early on to slow the growth of the cancer, her oncologist recognized that Kat needed better support to help with pain and anxiety. She referred her to a team of specialists with one collective goal: to give Kat back the quality life she once enjoyed.
This is Kat’s palliative care story.
What is 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.
For Kat, palliative care offered her clarity right from the start. Her team listened to her frustrations and took immediate action to address them. That team was led by a medical director who introduced Kat to Mark Curtis, an advanced practice registered nurse who has spent a great deal of his career helping patients like Kat live a better quality of life while facing serious illnesses.
“In short, palliative care is about relieving suffering,” says Mark. “Suffering can be emotional, physical, or spiritual. When I first met Kat, I understood quickly that she was dealing with all three.”
Palliative care specialists take the time to get to know patients and their family members so they can adequately treat all of the things that are affecting their lives. Kat and Mark bonded quickly.
“Kat has a great sense of humor and she’s very social. When you meet her, you sense that right away. But an illness can get in the way of being your true self, and in Kat’s case, it was.”
Although Kat was skeptical of how palliative care could help her at first, she agreed with her oncologist that she needed more help. Accepting the need for additional help can be hard for patients to admit.
“I don’t want to sugarcoat it. I was down before I went in there,” says Kat. “I was just feeling exhausted and worn out from everything. But it didn’t take long before I realized that Mark wasn’t going to let me stay down for long.”
Tackling the Stress
Mark says that when he and his team of specialists first meet a new patient, they don’t talk about the illness at all.
“What I did with Kat is what I frequently do at the initial meeting with most of my patients. I’ll introduce myself, explain who I am and what we do, and I’ll ask the patient to tell me his or her story,” explains Mark. “The interesting thing is that when people are asked that question, they don’t usually talk about the illness either. They talk about themselves.”
Mark believes it is important to tackle issues the patient may have had before their illness. He says getting to the root of the things that troubled the patient beforehand allows him to help the patient move forward.
“I feel like it’s important because without me telling him about my past, he really wouldn’t know the real me,” says Kat.
Kat always focused on the needs of family and friends — and not enough on herself, which caused stress before her illness and more so after the diagnosis since she had to spend time taking care of herself.
“I was always the person who took care of everyone else and I had a hard time saying no when I was asked to help. When I got sick it became even harder to be who everyone else wanted me to be,” says Kat.
Kat says the guilt of not being able to be there for her family weighed heavily on her. Recognizing this was a key to helping her move forward, Mark encouraged Kat to set boundaries in her life and only take on responsibilities she could handle. Although putting herself first was a challenge in the beginning, Kat slowly began to feel more in control.
“Mark gave me the tools to be able to put myself first. He made me realize that taking care of yourself first isn’t always a selfish thing. Sometimes it’s necessary,” says Kat.
Because stress is not a simple thing to tackle, Kat continues to work with Mark to discuss her issues more openly. With palliative care, she is able to share her deepest fears and anxieties along the way so the stress doesn’t get in the way of caring for herself and her everyday life.
Managing the Pain
With the treatment and cancer-related symptoms keeping her housebound most days, Mark and his team knew these were issues that needed to be addressed immediately. Kat was struggling with severe stomach pain as well as nausea and constipation, among other symptoms. Mark and his staff worked closely with Kat’s oncologist to address the symptoms as they evolved. They continue to work together on a weekly basis to ensure that pain doesn’t dominate Kat’s days.
“Mark and the palliative care team talks to me about my pain constantly and makes changes to my medication here and there so I can deal with the side effects from treatment. It’s an ongoing thing,” says Kat.
Balancing several medications along with the symptoms from the cancer and its treatment can be overwhelming. Mark says he noticed a major change in Kat’s demeanor once her pain became more manageable.
“When you can get a patient to that place where you can actually see the distress leave their face and a peace come about them, it’s a wonderful moment,” says Mark.
Regaining a Quality Life
Today, with her pain and stress being managed, Kat is able to set short-term goals to keep her active and out of the house as much as possible. She has been able to take vacations and visit family members, and keep up with her grandchildren as much as any grandmother can. Along the way, Mark and his team work with Kat to ensure that her pain doesn’t keep her from enjoying those moments. Sometimes, just getting out of the house for a quick errand is enough to make Kat feel excited.
“Mark helped me find the courage to get up and get out,” says Kat. “My mentality through all of this is that tomorrow is a new day and it will be better than today. My plan is to go shopping tomorrow but if I’m not up to it, that’s okay. I have the next day. Palliative care has given me that perspective.”
Although Kat hasn’t been able to return to work at the donut shop, she still receives letters from former customers checking in on her all these years later. Aside from her activities and family visits, Kat also spends her days telling others about palliative care.
“Whenever someone asks me how they can get help for their illness, I point them in the direction of palliative care. I tell them it’s where I found myself again,” says Kat.
For any step in your journey, resources about palliative care are available at www.getpalliativecare.org. Through this site, you can see if palliative care is right for you or a family member and find out where you can find a team near you so you can get started today.