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When Amy Berman of New York City was diagnosed with stage 4 inflammatory breast cancer, she learned that only a small percentage of people with her diagnosis survive to five years. That was five-and-a-half years ago, and Amy is still here. In fact, she is as active and fulfilled as she has ever been. She credits palliative care with keeping her healthy and lively as she deals with her illness. This is a story about making difficult but informed decisions. This is a story about finding happiness in the moment.
This is Amy’s palliative care story.
A lover of art, photography, travel and fun moments at home with family, Amy has always been an active person. In October 2010, she noticed a red spot on her right breast and immediately went to her doctor. Based on the appearance of the growth, Amy’s medical team was concerned that it was breast cancer. They then took a full scan, which confirmed the cancer and its stage.
“It was a devastating thing to hear. And it was surprising because I still felt great. If I had to put a penny down as a bet, I would have gone completely all in that they had caught it early. I would have never guessed it was stage 4,” says Amy.
Making an Informed Decision
For Amy’s diagnosis of inflammatory breast cancer—a rare disease—the numbers told her that 20 percent or less of people with her condition survive five years. Given this news, Amy knew she had some really tough choices to make. Because the cancer was terminal, Amy started to approach her decision from all angles. She looked into different treatment options such as chemotherapy and immunotherapy and also considered forgoing any treatment. These were not easy choices but raised important questions.
The first thing Amy did was ask her oncologist about all the options available. Her oncologist, who was trained in palliative care communication skills, worked with Amy and her family to match her treatment options to her life goals.
“When someone has palliative care training, one of the most important things they do for you is try to figure out what’s important to you based on where you are with your health and what you’re trying to accomplish,” says Amy.
Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of the disease. The goal is to improve quality of life for both the patient and the family.
For Amy, remaining an active person and continuing to work were important. After these discussions and getting a second opinion from another oncologist, Amy decided to have her pain and stress managed by palliative care and not to undergo treatments for the cancer itself that may have added side effects and increased hospitalizations. After making her decision, she felt that palliative care had given her a sense of control during this difficult time.
“I’m so happy that they had that kind of honest dialogue with me to try and support my goals. To try and support me having a good life,” says Amy.
Palliative Care is Not One-Size-Fits-All
While choosing to forego aggressive treatment while receiving palliative care may have been what Amy wanted, it doesn’t mean that this decision is right for everyone. Amy made her choice based on being actively-engaged in the discussion.
“If people aren’t participating in these conversations and decisions around their own health, they’re going to be guaranteed only to get the care and treatment that someone else thinks they should get,” says Amy. “My team advised me along the way, but they advised me on this after they asked me what I wanted,” says Amy.
Other patients may choose to continue receiving treatment for their illnesses. Those patients can still work with palliative care teams as they deal with the emotional and physical symptoms that may arise along the way. Palliative care teams often include doctors, nurses, social workers and chaplains who work with patients regardless of what kind of care decisions they make.
An Ever-changing Process
With serious illness, there are often new challenges to face. When the cancer—which had spread to Amy’s lower back—began to cause her discomfort, Amy turned to the palliative care team to help manage her pain and symptoms. They recommended radiating the painful areas, which worked well to relieve the discomfort. They then worked with Amy on a plan for if and when the pain or medication caused additional symptoms or side effects.
“Just having a plan in place made such a difference,” says Amy. “Having that support means that when I travel or go on a business trip, if something goes wrong, I’m prepared. I feel so well supported.”
The palliative care team is also there to help Amy and her loved ones deal with the emotional toll a serious illness can take.
A Baccalaureate Prepared Nurse and Senior Program Officer at the John A. Hartford Foundation, Amy continues to work full time. She also continues to travel. Since her diagnosis, she has climbed the Great Wall of China, ridden a camel in the Jordanian desert, jet skied around the Statue of Liberty, taken up the new hobby of photographing graffiti art. Amy also still works full time at the John A. Hartford Foundation.
“Being seriously ill is a terrible thing. But, if you can imagine living well in the face of serious illness, it’s such a special thing. I’ve had the benefit of palliative care to do just that. I’m living the life I want to live,” says Amy.
Want to find out if palliative care is right for you or a loved one? Click here.
Navigating the uncertain waters of high school and college can be challenging for anyone. Imagine spending those pivotal years with a serious illness.In the face of chronic pain and discomfort, constant doctor’s visits and hospitalizations and the stress that comes with giving up so much at such a young age, her goal is simple: to live the best life possible.
This is her palliative care story.
Aly has always been the type to want to do everything to her fullest abilities. That was apparent back before she ever dealt with an illness.
“I’ve always been the Type A personality,” said Aly. “That meant taking all advanced courses in high school and being in band, and I had a part-time job at Staples and was very involved in my church youth group. So it really was just this constant go, go, go.”
In high school, after feeling soreness and pain for an extended period of time, Aly was diagnosed with Juvenile Arthritis. Despite receiving treatment, her symptoms worsened. She began to lose significant weight and started to experience severe stomach issues. Just as she was beginning her freshman year at the University of Iowa, she received the diagnosis of Eosinophilic Gastroenteropathy, a condition that causes white blood cells to build up in the gastro-intestinal system and the blood.
Determined to live an active and normal life, Aly kept up with all of her classes, made many new friends and participated in the University of Iowa marching band. Towards the end of her last semester of freshman year, however, the symptoms became too much to handle. The stomach issues continued to get worse despite her close attention to her diet, and eventually she had to take her meals through a feeding tube which she administered herself. Eventually, she was admitted to the hospital for closer attention.
“I think that’s the turning point and sort of where I found myself just desperate for help in figuring out not just my physical symptoms, but also how to have the best quality of life and to make goals that were reachable and that weren’t going to put my health and my life at risk,” said Aly.
That’s when Aly found palliative care.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life of both the patient and the family.
Aly met with Dr. Rebecca Benson, Medical Director of the Pain and Palliative Care Program at the University of Iowa Stead Children’s Hospital. Dr. Benson’s team sees over 200 young patents a year with varying illnesses including genetic and neurological disorders, cancer, heart and lung conditions and many others.
The first thing they discussed with Aly was her disappointment in not being able to live the life the way she had wanted.
“I think it was very frustrating to her to not be able to succeed in the ways that she had previously been able to succeed,” said Dr. Benson. “Having to drop a class because she’d been hospitalized and couldn’t make it to the class was a major frustration and a major loss for her,” she added.
Although Aly was initially hesitant to join the first meeting because she had been constantly seeing new specialists, Aly felt that she was supported immediately. Having a team that took the time to gain a full understanding of both her symptoms and her frustrations made a difference.
“It started with feeling like I was being listened to,” said Aly. “They let me finish everything I wanted to say before reacting to it, and I think what really made it hopeful was that I finally felt very affirmed.”
In addition to providing support for the depression and anxiety that stemmed from her illness, the team helped Aly find additional outlets for her stress. She began seeing the team’s chaplain to discuss spiritual matters and also worked with a musical therapist to express her emotions through song. These approaches had an immediate effect on Aly’s well being.
“It was the first time in a long time that I felt that there was any hope or any chance of making things better or finding a way to deal with my illness to the best of my ability,” said Aly.
With the lines of communication open and with a level of trust established, Dr. Benson’s team got to work on managing Aly’s physical symptoms. A key element of her pain management was helping her understand how articulate the ailments to her other professionals. Serving as a mediator between different specialists is a common role for palliative care teams, but for Aly, whose diagnoses have changed over the years, this was essential.
“I think palliative care gave me that voice because I needed that. Whatever I said, they had my back,” said Aly.
Dr. Benson also helped Aly set goals for herself—both short term and long term—so that she was still able to participate in social activities and attend band marches and performances.
In between returning to classes when she could, Aly would need to be admitted back into the hospital periodically when her symptoms were troubling her. All the way through, palliative care was there to support her. As the months and years progressed, a more robust pain plan and some additional support to assist her in advocating for herself were helping, but with a chronic illness, there’s always more work to be done. The emotional toll a serious illness takes on a patient can be difficult to overcome. Aly still works with the palliative care team to focus on taking small steps forward.
“The ultimate goal is to get physically better, but that can’t be true if you’re not emotionally and psychologically at a place where you can make those goals and improve each day,” said Aly.
Today, Aly is still focused on a quality life.
Aly is still the go-getter she was as a kid despite her illnesses. Although her symptoms continue to keep her from enjoying all the activities she wishes to pursue, she enjoys spending quality time with friends and family and is still working towards her degree. Becoming an advocate for palliative care has also been an exciting new venture.
“I had to change what it is I could do to bring purpose to my life, and palliative care was a big part of that,” said Aly. “Dr. Benson helped me realize that I have something that I can share with the world.”
As Aly continues to live life to the best of her abilities, she is proud of the progress she has made thanks to palliative care.
“It’s all about trying to find those ways to make your life important. And palliative care has been huge in getting me to see those parts of my life and how important they are. Palliative care has helped me to feel like I can take control back from a situation I had no control over,” said Aly.
Want to find out if palliative care is right for you or a loved one? Click here.
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