Living well with serious illness: Beth’s appendix cancer story
For many years, Beth, 55, of Baltimore couldn’t shake the nickname her sister and friends gave her.
“They called me Balloon Hand Beth because whenever someone needed something, my hand would float up to volunteer,” says Beth.
Beth has always been very active and willing to pitch in. In her professional life, she has worked tirelessly to improve her city’s environment one planted tree at a time as the Director of the Office of Sustainability in Baltimore. Most days, if she’s not helping out a relative or preparing to host a family holiday party, she can be found in her garden, meticulously growing her own food.
“In the garden, things don’t stay the same. Sometimes a flower doesn’t come back or you have to move things around to make it right. It’s just like life. You have to adjust to your new normal,” says Beth.
Beth has had to use this same philosophy when she was diagnosed with a rare form of stage IV appendix cancer. After multiple surgeries and chemotherapy regimens left her weak and unable to do the things she loved, for the first time in her life, Balloon Hand Beth was the one who had to ask for help. This is her palliative care story.
Finding Palliative Care
After she was diagnosed, Beth was seeing several oncologists and other medical specialists to reduce her cancer which had spread to her liver. While her team of doctors was working hard to fight the disease, Beth was left with a long list of medications to help her with her pain, fatigue, nausea, and other difficult symptoms. However, with each medication came side effects, and the combination of treatment regiments, surgeries, and mixed medications was keeping Beth in bed most days.
“I lost a great deal of weight. I wasn’t eating. I was at rock bottom,” says Beth.
It eventually became clear to Beth’s doctors that she needed focused help with her symptoms. That’s when she was referred 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.
Rab Razzak, a palliative care doctor at Johns Hopkins Medicine and one of the members of the palliative care team treating Beth, says one of the first things he asks his patients is: “What do you know about palliative care?” If a patient is uncertain about what it is and what to expect, he takes the time to explain it.
“From the onset, it is important that patients have a clear understanding of who we are and how we can support them,” says Dr. Razzak. “It’s the first step in building an open and honest relationship.”
In that initial meeting Rab explained how the palliative care team of specialists, which includes doctors, nurses, social workers, and pharmacists, could alleviate the pain Beth was feeling and could also work with her to set small goals to move forward.
“I can’t tell you how nice it was to be talking about the future or about being more active,” says Beth. “When you have cancer, you end up spending so many hours thinking and talking about growth levels and medicine. Just to be able to focus on some actual steps forward was world changing for me.”
Addressing the Symptoms
Another member of the palliative care team at Johns Hopkins is Julie Waldfogel. She’s a palliative care pharmacist who specializes in how pain medication affects patients.
“Pain management for people with serious illnesses isn’t just about medication. It’s about listening to the patient and understanding which medications are working and which ones are causing more issues,” says Julie.
The first thing Julie did was take a very close look at all the medications Beth was taking week to week. She then began eliminating certain medications and changing certain medications to find the right balance. In time, Beth’s medication list was reduced significantly, and she started to feel the results.
“With just a few small tweaks from a person who took the time to understand how the medication was keeping me from doing things cleared the path to move forward,” says Beth. “I suddenly had strength again.”
Over time, Beth felt more energy and has been able to travel, garden, and spent quality time with family. Although she continues to receive treatment for her cancer, she now has a partner in Julie to help her with the ongoing changes that come with pain management.
Patients dealing with stage IV cancer often spend a great deal of time shuffling around from appointment to appointment. Keeping up with specialists and schedules can be an enormous burden Beth’s palliative care team—like all palliative care teams—work in close coordination with her other specialists so that everyone is on the same page.
“It has made all the difference for me,” says Beth. You reach a point when you have a complicated medical situation and things can get confused. I have multiple doctors. I’ve had several surgeries and surgeons. The palliative care team really helps distill all the information and explain it to me in a clear and direct way.”
The social workers on the palliative care team help Beth move forward by tackling the stress that comes with dealing with illness. One example of stress came when Beth had to resign from her job due to the growing number of medical appointments.
“Walking away from work was really tough. It’s my passion. But the palliative care team helped me realize that I can still help even if it’s in a small way. We talked through how I felt about it and then created an action plan for me to still attend certain city events and meetings here and there so I still feel connected to what I love,” says Beth.
As she continues to deal with her cancer, Beth says she now finds joy in the small things again.
“Even if it takes me a while to get moving each day, it feels good to be able to raise my hand when someone needs me again. I’m just so grateful that my palliative care team raised their hands when I needed them most,” says Beth.
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. You can also check the Provider Directory to find out where you can find a team near you so you can get started today.