Patient StoryMar | 9 | 2023
“In 2018, I started to get really sick. All of a sudden, one day I woke up and I had severe swelling in my ankles, and that was peculiar to me, but I ignored it. And it went away. Then I started getting swelling every day. That led to intense bone pain where I could barely walk. Again, being naive and stubborn, I thought, ‘It'll go away. It'll go away.’ It didn't. So, I went to my primary care physician Dr. Jonathan March, who I love and adore and is a true partner, and we started a summer of testing.”
A series of tests ruled out many things, but Kelley was still without a diagnosis. After noticing curling in her fingernails (known as ‘nail clubbing,’ often linked to heart and lung conditions), Dr. March referred her to a pulmonary specialist who ran a lung function test. After passing the lung function test with ‘flying colors’ despite her other symptoms, Kelley’s pulmonary specialist decided to run a low-dose CT scan. A few days later, the results were in, indicating something was found on her lung. Kelley had a lung lumpectomy performed at Mass General Cancer Center in December of 2018.
“Having that partnership with my primary care physician and the doctors here at Mass General Cancer Center, that synergy saved my life.”
Her lung cancer diagnosis was not Kelley’s first experience with cancer. After watching her mother go through treatment for ovarian cancer, at age 24 Kelley made the decision to be proactive and get genetic testing done. “My mom broke the cycle by getting genetic testing done, that knowledge is so impactful. She is now a 20+ year ovarian cancer survivor.”
Turning to advocacy was the natural response. “Volunteer work and work with the community is really important to me. It's been a part of my life ever since I was little. I get more out of helping other people. Cancer runs in my family and being positive for the BRCA1 gene gave me a platform to talk about being proactive and how knowledge becomes powerful,” explains Kelley.
Being a non-smoker, Kelley never thought she would get diagnosed with non-small cell lung cancer. “I had prepared myself for breast or ovarian cancer, but lung cancer was never on my radar.” Working with the American Lung Cancer Screening Initiative and The White Ribbon Project, Kelley has been able to connect with an amazing group of lung cancer patients, survivors, advocates, caregivers, and medical professionals with the goal of increasing awareness of the disease and increasing access to screening and testing. “It’s just so powerful to be in a room full of lung cancer survivors.”
“My biggest takeaway is if you have lungs, you can get lung cancer.”
After Kelley’s lumpectomy she was given the news that she would not need to receive any post-care; she was cancer-free. Although she was relieved to have received good news, Kelley knows this is not the norm for most patients. “I didn’t have to go through chemo or radiation, but I was still on the operating table. It’s taken me years to say this, but I was on the operating table, my life was in someone else’s hands.”
Living life as a lung cancer survivor has been an opportunity for Kelley to spread awareness. Knowing she is in the minority of lung cancer patients who don’t require follow up care hasn’t stopped Kelley from using her voice to advocate for herself and others.
“I felt I was drifting, I was physically here, but not mentally. I would go to work and would be on autopilot. I couldn't relate to certain things. I breathe heavily when I walk, and I had some social anxiety about my breathing. I cannot tell you how awesome it's been to meet up with people who have lung cancer and they say, ‘we breathe like each other!’ It is silly, but having that connection was really powerful.”
“I was diagnosed with post-traumatic stress disorder, I worked with a professional therapist. With all of these experiences, I kept thinking, ‘That's not me. That's not me.’ I buried it away until it came to the forefront, and I had to deal with it. That’s my journey—not only the physical health journey, but mental health. I wasn't advocating for myself before. It's nice now that I can. I was ashamed but I'm no longer ashamed. I'm taking back that power.”
“If you're currently going through treatment for cancer or you're newly diagnosed, it sucks. Just embrace the suck. And if you're not feeling well that day, you don't have to be happy... it's okay not to be okay. Sometimes people don’t know what to say or do when they hear you’ve been diagnosed with cancer. Take it day by day, seek connection online through support groups, and reach out to your care team at Mass General for support.”
Kelley deeply understands the importance of showing up for your friends and family who are going through challenging times as sometimes it's hard to ask for help. “In the moment, it’s overwhelming to hear, ‘let me know if you need anything.’ A friend of mine was just diagnosed with breast cancer, and she lives alone. I told her, ‘I just looked at flights, I am going to fly out to you to help with your care after surgery, let me know what dates you need me there.”
Leaning on her sister and mother for additional support has taught Kelley these same lessons. As a nurse, Kelley’s sister was able to take all the medical information Kelley was hearing at her appointments and break it down in a way that Kelley could understand. Caregivers have a special place in Kelley’s heart, and the support from her friends and family empowered her to be able to ask for the assistance she needed to continue to live her life in a powerful and impactful way.
Kelley JonesIf you're currently going through treatment for cancer or you're newly diagnosed, it sucks. Just embrace the suck. And if you're not feeling well that day, you don't have to be happy... it's okay not to be okay.
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