Living well with serious illness: Karena’s colon cancer story
Many patients facing serious illness say that some of the most difficult things to deal with are pain, stress and a loss of control. This is because an illness like cancer, COPD, kidney disease or ALS can make an independent person feel helpless for the first time in their lives.
Karena Barton, a fiercely independent woman in her mid-30s, is known to her family and co-workers as a hardworking and determined powerhouse. But a diagnosis of colon cancer, and the symptoms that followed, threatened to stop her active and productive life in its tracks. She was in pain. She had anxiety over paying her medical bills and having to cut down on her work hours as she underwent treatment. She was worried about not being the “rock solid mother” she had always been to her two children. She feared the unknown of how colon cancer would affect her life and her marriage. She felt lost.
When you’re like Karena, admitting you need help isn’t easy. But once she found it, she was able to take the first steps toward living the life she wants to live.
This is a story about not compromising who you are in the face of illness. This is a story about regaining control in the most difficult times. This is Karena’s palliative care story.
Karena, her husband, and their two sons, who live in Maryland, are no strangers to facing adversity. At a young age, one of her sons was diagnosed with Asperger Syndrome, a form of autism. Since that day, Karena has devoted most of her time away from her job at a convenience store to give her son the best life possible.
“One of my biggest passions is working with him to make sure he can accomplish everything he can. I’m always encouraging him to overcome his obstacles and he’s done beautifully. Little did I know I would have to face my own obstacles,” says Karena.
Over four years ago, after severe stomach pain caused her to miss work, Karena knew something was wrong. After all, she hadn’t missed a day of work in three years. When test results eventually revealed that she had cancer, she went into shock.
“I just couldn’t understand it. I don’t smoke. I don’t drink. I eat right. How could this be? I looked at my husband and just broke down,” says Karena.
Although chemotherapy was an option, the shock quickly turned into fear over how to pay for the treatment and any medication that were needed.
“At the time, the bills were enormous. It was so scary,” says Karena.
The physical challenges of dealing with the illness were also difficult. There were constant aches and pains as well as constant bleeding. She was also losing weight quickly. In just one month, she went from 130 pounds to 104.
Despite the financial barriers, Karena began seeing an oncologist who was helping her by treating the cancer, but not a lot was being done to address the pain and mounting stress over an uncertain future. Recognizing that she could benefit from additional medical services to address those issues, Karena’s oncologist referred her to a palliative care team.
Palliative care is specialized medical care for people with serious illnesses. Patients can receive it at any point in their illness, including at diagnosis, and can receive it while receiving treatment. This type of care focuses on providing relief from the symptoms, pain and stress of the illness. It helps a patient understand the disease and the treatment options. It also helps his or her family cope with the everyday challenges of helping someone with a serious illness.
Treating the stress
Through initial conversations, Amy Shives, a licensed clinical social worker with the team, recognized that Karena was struggling with a lack of control. The first thing Amy did was focus on the things that Karena could control.
“I have my days where I am grumpy or miserable, and now I have someone to call or see. If I’m feeling down or frustrated, I just talk to them. They let me vent and they give me an understanding that what I’m dealing with is normal. It’s important to have someone to talk to outside of your family because you can just let it all out,” says Karena.
In addition to lending an ear on tough days, the palliative care team encouraged Karena to join support groups where she could connect with other patients dealing with similar issues which she has enjoyed. Her children also attend a children’s support group to help them deal with their mother’s situation.
At one point, Amy’s team recommended that Karena take medication to deal with the anxiety, but Karena refused because she wanted to limit the amount of pills she was taking. Because palliative care supports the goals and wishes of a patient, her voice was heard.
“One time, I was going through a little bit of depression, and I did not want depression meds so instead, I actually went and bought a dog. When I went into palliative care and said, ‘I got a dog to help with my depression,’ the team was wonderful. They all started showing me pictures of their dogs too. It was great to see that they supported me and my decisions,” says Karena.
Tackling the pain
Despite receiving help for the emotional stress, pain continued to be a major issue for Karena. In addition to symptoms caused by the illness itself, the cancer spread to her lungs which required surgery. Recovering from surgery took a big toll.
“Our team’s nurse practitioner worked with Karena to get her pain under control,” says Amy. Pain can change every day and it’s important that we keep close contact with her so we can adjust medications and keep her feeling well.”
Karena also was reluctant to take pain medication on a consistent basis.
“When I first met with palliative care, I had been dealing with severe pain for four months and it wasn’t being treated in a way that helped me. I honestly felt like I couldn’t bear it anymore,” says Karena.
Karena was adamant about not wanting to deal with the constant side effects of certain pain medications like fatigue or dizziness, and because of that desire, she first tried to avoid taking any medication. This was a struggle that palliative care needed to address.
“Although I fought against taking meds at first, they explained to me that you can’t go through cancer without dealing with the pain in a real way. But I still wanted to make sure I liked the meds they were prescribing me. Sometimes I’d say ‘No I don’t like that particular medication because I don’t feel alert when I’m on it.’ They’d then work with me to find the right fit that helped my pain but also allowed me to stay active and with it mentally. That was important to me,” says Karena.
With the right pain plan, Karena began to feel improvement in her well-being, but staying active with a serious illness isn’t as simple as taking medication. Making a concerted effort to get up and out can be one of the most difficult things for a patient to do especially on the harder days.
“Palliative care encourages me to exercise and to walk when I can. Even though I’ve spent most of my life taking care of my family, they encourage me to also make my own health a priority. Without palliative care, I don’t think I would know what that means and what it looks like,” says Karena.
Fortunately for Karena, her treatment has been successful so far. Although it may return in the future, at present, Karena’s cancer is under control and she is able to work part time and spend quality time with her family. Palliative care has encouraged her to focus on activities that bring her joy such as scrapbooking, cooking and making things like wreaths for Christmas. Last year, she accomplished a major goal of watching her son overcome his limitations due to Aspergers and graduate high school. It has been the proudest moment of her cancer journey so far.
“On most days, I feel happy and healthy. Palliative care is a program that helps me live day-to-day. They have helped get me back to being the person I used to be before my diagnosis. I’d be lost without them,” says Karena.