Benita Johnson could not be more grateful for today. She was diagnosed with pancreatic cancer in December of 2022. During her treatment, Benita was forced to confront the challenges of her diagnosis, including the fragility of life.
“My journey has been a roller coaster ride of emotions,” said Benita. “Dealing with the issue of my own mortality, dealing with the illness, compartmentalizing certain things so I can at least get through one process at a time and not feel so overwhelmed. I think right now what I’m feeling is a sense of relief but a sense of joy and comfort that I have come through this ordeal.”
Throughout her pancreatic cancer journey, she has learned to take her life into her own hands, and sometimes, she has come to understand, that means reaching out for a helping hand.
Coping with Pancreatic Cancer
Benita was born and raised in Washington DC, however, she moved in with her grandmother in Pittsburgh when she was about eighteen. From there, she transitioned into the public sector, working for nonprofits for the beginning of her career until landing her current job with the Department of Housing and Urban Development.
This job has taken her across the country and introduced her to many different people, which gave her an appreciation for collaboration and friendship. She would call upon her ability to connect with others when she was forced to confront one of the biggest challenges of her life: pancreatic cancer.
Coming Face to Face with Pancreatic Cancer
Benita began her pancreatic cancer journey not with a diagnosis, but with pancreatitis. In late 2022, she went to her local hospital in Delaware, hoping to find relief from her painful symptoms. The hospital informed Benita that the problem was likely much more severe than pancreatitis; she had a growth in her pancreas and would need to see a specialist for further testing.
Though the hospital didn’t have the resources to give Benita a conclusive diagnosis, an oncologist visited her to talk about the possibility of a cancer diagnosis. As they discussed her potential tumor, Benita felt the world slip out from under her feet as she came to terms with the reality of her condition.
“He said, ‘This looks very serious…’ and I said, ‘Okay, what’s the worst-case scenario that I’m looking at?’” Benita recalled. “He said, ‘Well, you may only have six months to live…’ I was just in a state of shock.”
That night, Benita couldn’t sleep. She lay awake in her hospital bed, feeling the full weight of her potential cancer diagnosis set in.
“[I was] just thinking, ‘this is it, I have to start preparing for the end of my life.’ It’s one thing when you think about it in theory, it’s another thing when you’re presented with something that actually threatens your morality and you have to start doing this for real…I was wrestling with feelings of being cheated. I had just gotten to a point in my life when I felt things were finally starting to go right…I remember saying to myself, ‘I just can’t catch a break. I’ve worked hard all my life and I don’t have anything to show for it.’ I said to myself, ‘Your life is over and you never even had a chance to be somebody.’”
But when dawn broke the next morning, Benita concluded that she would fight whatever life threw at her next. She simply didn’t have time to feel sorry for herself anymore; she had a battle to win.
“By the time the sun was rising, I said to myself, ‘Today is a new day,”’ Benita remembers. “I decided that I wasn’t going to feel sorry for myself anymore. I sat there and said to myself, ‘You’re already somebody. And if you don’t know that by now, shame on you.’”
Treatment Takes its Toll
Benita quickly did what she could to take control of her health, seeking a follow-up appointment at Johns Hopkins where doctors were not only able to stabilize her symptoms but also could give her the much-needed answers about her condition. She had pancreatic cancer.
Thankfully for Benita, the tumor had yet to metastasize. After her initial diagnosis in January 2023, Benita was able to start chemotherapy treatment and proceed with the Whipple procedure later that year in March. She received care for her procedure at Johns Hopkins, a high-volume center. A high-volume center or hospital is a place that has performed many Whipple procedures, which decreases a patient’s risk of complications. We at Project Purple recommend patients seek out high-volume centers if they are considering undergoing the Whipple procedure.
Benita came through her procedure smoothly and was sent back home to recover. However, it wasn’t long before she was readmitted to the hospital with a serious sepsis infection. She was in the hospital for nearly two months and again underwent surgery to get her condition under control. The infection had not only begun to attack her body, but also her artificial knee. Though she was able to withstand the procedures, Benita admits that she was beginning to feel the strain of her diagnosis.
“I took things as they came as far as my treatment plan, going to get my treatments, working with my oncologist, and then dealing with the surgery,” Benita said. “But once I got hit with the infection it just seemed to knock what wind was left out of my sails.”
The emotional toll of her pancreatic cancer diagnosis began to weigh on Benita. She realized that for a lot of her journey, she had been pushing away her negative emotions in order to concentrate on her treatments. The infection had forced her to pause, and it was only then, Benita remembers, that she began to feel the brunt of all that pent-up negativity.
“I wound up being very depressed and I think a lot of it had to do with not really having a chance to have everything settled, as far as my illness, my treatment, and how I felt as a person,” said Benita. “…Once I was in the hospital and all this had a chance to settle I had a chance to talk with my doctors, and I had quite a few, and they all agreed that I also needed treatment for depression because of all the trauma I had been through.”
Thankfully, Benita was able to get the care she needed from the staff at Johns Hopkins. Her doctors were able to devise a plan for her to receive treatment for her depression as well as her cancer. Benita could not be more thankful for the support.
“Johns Hopkins is a wonderful hospital,” said Benita, “just the wrap-around services that I received, working with the chaplain’s office and the psych nurse, who visited the patients in the infusion center, just checking in on them to see how they were doing. All of that made a tremendous impact on my recovery.”
Though the support helped her continue on with her treatment plan, Benita soon realized that she would need a little extra assistance when it came to her medical expenses.
Finding a Helping Hand Through Patient Aid
Throughout her diagnosis, Benita took sole responsibility for her cancer journey. With no nearby relatives or friends, Benita became her own caregiver. While she relied on the hospital and distant friends for emotional support, she soon began to struggle with mounting medical bills, as well as feelings of loneliness. After she had reached her insurance limit, Benita began applying for several other assistance programs to help her with the remaining balance. Due to her income, she was unable to qualify for most of them. Finally, the hospital connected her to Project Purple where she was able to get the help she needed.
“It made me feel that I was not alone, that there was some financial help out there for me,” said Benita. “It gave me a sense of comfort in many ways.”
Project Purple’s Project Purple’s Patient Financial Aid program (PFA) is designed to help patients with medical and everyday living expenses so patients can focus on what matters most: the fight against this disease. Benita states that the financial support she received allowed her to concentrate on getting through her treatments rather than how she was going to afford to get well.
“The financial assistance that Project Purple provided to me to help reduce my medical bills really gave me a sense of hope,” said Benita.
When she applied for Project Purple’s PFA program, Benita not only received the help she needed, she also discovered a new community of patients just like her. Knowing that there were others out there who were battling the same disease allowed Benita to feel a sense of comradery and community that helped ease her feelings of isolation.
“When I looked at your website, I didn’t feel so alone, in the fact that I was going through this particular journey by myself,” said Benita. “When I looked at the pictures of other people going through their cancer journeys and what it meant to them and their stories, it just made me feel that I was connected to a larger community.”
Benita believes that the aid and community that Project Purple provided her with truly made an impact on her diagnosis. She states that while it is important to emotionally support pancreatic cancer patients during their diagnosis, she also knows firsthand how financial stress can harm a patient’s well-being.
“We all hear stories about how someone’s savings, how someone’s retirement is just eaten away by medical bills because of a catastrophic illness. When people think of someone dealing with something like this, they think about the journey that the person is on as far as their health is concerned, but one of the key things to overcoming and coping with an illness is the reduction in the level of stress,” said Benita. “There is nothing worse to elevate stress during a time of illness than the financial burden that it imposes upon people and their families… It really made me feel as though I am not shouldering this financial burden by myself.”
Benita encourages those who are struggling with the financial burden of a pancreatic cancer diagnosis to reach out to Project Purple for support.
“If you are afraid, that’s okay. Fear is a part of this journey,” said Benita. “Conquering your fears is a part of this journey. And knowing there is an organization like Project Purple that’s out there, it can help you with some of the fears and angst that you may be feeling as well as being a wonderful resource for your friends and family as they help you through your journey.”
Since its inception in 2012, the program has paid an excess of over $1,000,000 to help more than 1,300 patients cover medical bills, utilities, and housing expenses. We have never turned away a qualified patient. If you are in need of assistance, please apply today!
Please consider donating to our Project 360 fund, which directly helps fund our financial assistance programs. Your donation will go towards helping countless patients like Benita who need extra support during their diagnosis. If you are interested in donating to assist patients directly through our PFA program, please click the link here.
Today is a New Day
Benita rang the bell for her last treatment in December of 2023. She routinely returns to Johns Hopkins for screenings, and so far, they have been clear.
“I see things a lot differently now, I don’t let things get under my skin and get to me like they used to,” explained Benita. “What’s important for me is to live each day with a sense of purpose and to be appreciative of the day and the experiences I have had within the day…”
She intends to approach 2024 and beyond with a sense of appreciation for the world around her and her part in it.
“We always think of a New Year as being the start of a new opportunity, we see promise, we see hope… for me, I see this new year as really a new start in my life,” said Benita. “I feel like I’ve been given a second chance at life. I feel that I now have hope and appreciate each day… I live for today, and today is a gift.”
We are so happy to have patients like Benita as part of our Project Purple community; you are truly the reason we fight for a world without pancreatic cancer. If you or a loved one is battling pancreatic cancer, please visit our Patient Financial Aid webpage for more information and to learn how to apply for the program.
