Living well with serious illness: Gregory’s lung cancer story
Gregory has never been much of a runner. When it comes to exercise, he’s always preferred hiking. But tomorrow, along with his wife and two young children, he’s going to attempt to run his first 5K. For any of us who don’t run very often, a race like this would seem like a challenge in and of itself. But for Gregory—who has been living with stage IV metastatic non-small cell lung cancer for a little over a year now—it’s much more than that.
“If you had asked me back then if I ever thought I’d be here preparing to run a race, I wouldn’t have believed you,” says Gregory from his home outside Atlanta.
Back then, shortness of breath coupled with the painful side effects of a surgery to remove fluid in his lungs were consuming Gregory’s life. He needed support to relieve his symptoms and he needed help understanding how to best prepare for an uncertain future. Most of all, he wanted to get back to being the active person he always was.
That’s when Gregory found palliative care.
Gregory’s story—like so many people facing serious illness—begins with the shock of a diagnosis. Doctors had monitored and periodically scanned a nodule on Gregory’s lungs for over 14 years but had concluded that there was no medical risk. Therefore, when Gregory, who doesn’t smoke, went to the hospital complaining of breathing issues, the first thought was that it was pneumonia.
“The next thing I knew, I was in surgery to remove the fluid,” says Gregory. Soon after I woke up, they told me it was cancer.”
After the initial shock began to wear off, Gregory tried to wrap his head around the difficult news. Fortunately, Gregory’s oncologist explained that he was eligible for gene-targeted treatment which attacks a person’s genetic mutation. Despite having a plan of action in place, his oncologist recognized that there were lingering issues that needed to be addressed beyond treatment. The first was the chest pain and shortness of breath. Gregory was also dealing with gastrointestinal issues from surgery and was feeling very fatigued. Another issue was the stress and anxiety stemming from the uncertainty of his situation.
“When you have this diagnosis, there seems to be no way to plan. What if the treatment works? What if it doesn’t? What if this pain keeps me from doing the things I want to do? It was all very overwhelming.”
Gregory’s oncologist felt that while she would focus on his treatment, he could benefit from specialists who could spend a great deal of time helping to get his pain and stress under control. She referred him to a colleague, Dr. Anna Skold, in the palliative care unit.
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.
Dr. Skold and her team of doctors, nurses, social workers and chaplains spend time with each patient to dig deep into the issues at hand.
“The first piece is listening,” says Dr. Skold. “We have to understand where the patient is coming from, what’s bothering them, and where they hope to be. Only then can we begin treating the symptoms.”
Anna and her team start by asking patients about their goals. Gregory had many. For starters, he is a professor of statistics at the University of Georgia and wanted to get back to teaching as soon as possible. He also wanted to be able to keep up his hobbies which include woodworking in his garage and wanted desperately to spend quality time with family. On the day that he walked into his first palliative care consult, these wishes felt like tall orders, but helping patients reach goals is one of the main focuses of Anna’s practice.
“The aim of symptom management is to get the patient back to doing what they love,” says Dr. Skold. “If we can get a patient back to doing those things that give them purpose, we are going to immensely improve his or her quality of life.”
Tackling the Pain
While the gene-targeted therapy began to slow the growth of his cancer, the symptoms still needed to be addressed. Moving in step with Gregory’s oncologist, Anna has been able to help Gregory work through some of the issues by adjusting medication and in some cases taking away medication to reduce side effects. This has allowed him to feel less fatigued day-to-day. The palliative care team also provides Gregory with practical tools to combat the pain.
“They have showed me things like how to change the way I breathe when I’m feeling pain. This helps me calm down and find comfort,” says Gregory.
The palliative care team also encourages exercise and has helped Gregory set realistic goals to feeling better post-surgery.
“The first day I was able to walk a few feet. Then a few days later, I made it to my mailbox. Eventually, I was walking around the block. Anna and her team were able to get me back up and out the door. That was huge,” says Gregory.
In the first six months of palliative care treatment, Gregory lost weight through diet and exercise so he could be more active. Before long, he was hiking again and even working out in the gym.
“You feel like yourself again and there really is nothing better than that,” says Gregory.
Managing the Anxiety
Anna and her team recognized early on that Gregory wanted two things from his medical professionals: compassion and directness.
“We go where the patient wants to go,” says Anna. “For Gregory, he had a lot of questions about treatment, prognosis and what to do next.”
Anna started by giving Gregory straightforward information about his illness and treatment trajectory and what that meant for the future. She along with her team’s social worker and chaplain put an emphasis on incremental progress forward by focusing on the things that can be accomplished today. For Gregory, this is the right recipe.
“I go to them when I hit a wall. When things go badly or when I’m frustrated. They are able to hear me and then tell me the hard truths. You don’t want someone to sugarcoat things when you’re in this situation. You want to learn what’s going on, process it and move forward, but you also want to feel like they care about your well-being,” says Gregory.
At tomorrow’s 5K, Gregory isn’t trying to set any records. He’s just happy to be outside with his family next to him taking it one step at a time.
“That’s all any of us can do,” says Gregory. “Palliative care gave me a direction forward when I didn’t feel like I had one. They managed my pain, listened to my worries and equipped me with the tools to move forward. This was the medical care I was looking for.”
For more information on how you can receive palliative care, visit www.getpalliativecare.org.