It began with back pain in June 2015. The pain grew more severe over a few short months, to the point it was disrupting sleep and work. After a series of scans, I was finally sent for a bone biopsy in early December 2015. I was told over the phone the following week that it identified metastatic cancer, but did not know for several days that the primary cancer was lung cancer.
In January 2016, I began treatment for my bone metastasis. I had a lobectomy in March 2016 to remove the area with the solitary tumor of primary cancer. I was told I had adenocarcinoma and later tested and found to have the EGFR mutation. I have also tested positive forT790m. I currently take Tagrisso, which has kept me stable, with the exception of limited treatable progression here and there. I am thankful to still be seeing benefits on treatment after 2 years and am keeping my fingers crossed that it will continue to be effective for some time.
I am a survivor. To me, at its most basic, survivorship is enduring whatever I have to in order to stay in the game. To me, that translates as whatever it takes to do that—toxic treatments, bad days, scars, lots of doctors’ appointments, and being poked and prodded. Most days, fatigue is my biggest issue. It is extreme and very limiting. Occasionally, pain from treated bone metastases can limit me as well, and there are the minor annoyances like losing toenails or eyelash infections.
Overall though, I am doing well and am grateful to be on this treatment. However, I believe living a life is not the same as staying alive. Life should be filled with connection, purpose, and enjoyment—at the very least at least pursuit of this. Lung cancer doesn’t change this pursuit. As part of my litmus test to ensure I am living a meaningful life with the time I have left, I ask myself: does it contribute to those things in a positive way? If the answer is yes, I make space for it if I can. If the answer is definitely no, then it is something I have to let go of to continue to “survive” and feel comfortable in how that looks for me.
Something that passed this test was a recent trip I took to the Maldives. This is not a trip I would take under normal circumstances; I am an avid homebody and tropical islands and redheads don’t get along. However, my all-time favorite band was playing, and I knew this was a trip that would be full of connection and enjoyment. It turned out to be amazing! While lung cancer is an incredibly challenging disease, we can truly live our “best lives” after diagnosis.
As a clinical social worker and mental health provider, I cannot say enough about the importance of making sure that you are taking care of yourself. Medical social workers are fantastic resources for assistance with so many things—from financial assistance to emotional support, yet many people are unaware they exist. If you need help with anything, ask to speak to a social worker at your cancer center.
It is important to remember to be kind to yourself—it is an incredibly difficult adjustment to make to living with cancer, especially if you didn’t have indication that it was even a possibility, as is the case for many of us. Allow yourself to manage, however you need to, without thinking you “should” be feeling, thinking, or doing certain things. I was glad that managing my mental health was one of the first things recommended to me at my initial oncology consultation. I believe it should always be a part of the conversation when checking in with cancer patients.
I often tell people I am the same person I was before the cancer—the same personality, the same likes and dislikes, the same values; however, at the same, time everything about me is different—how I view the world, how I manage things like relationships and time, how I feel physically and emotionally, and even how I look.
Cancer, especially the fact that lung cancer has the prognosis it does, has affected every area of my life. The biggest downside surprised me; to me, it is not necessarily the likelihood of a much shortened life span, but rather the physical and related functional impairments—not feeling as well as I’d like and not being able to do as much.
Not all change has been bad, though. I have to work hard to be mindful and to stay in the moment. The natural result of that is that I am oftentimes quite content, grateful, and even happy, not in spite of, but because of this disease, it would seem. There is little I take for granted in my present, and little I expect—that has enriched my life in a great many ways.
Have more questions or need more advice? LUNGevity offers many programs for those looking for support! You can join LUNGevity’s LifeLine, a peer-to-peer buddy matching system, where you will get paired with an experience mentor who has been through what you are going through. You can also call the Lung Cancer HELPLine to talk to a social worker, who can help you manage emotional, financial, and support challenges. LUNGevity also offers in-person educational and support opportunities; find a Lunch & Learn near you or join us at the International Lung Cancer Survivorship Conference every spring!
For more resources and information, check out the Survivor Resource Center.
Kerry Beldin is an associate professor of social work at the University of Nebraska at Omaha, a licensed mental health practitioner and a life-long music enthusiast. She was diagnosed with stage IV lung cancer in December 2015 at the age of 42. Kerry has been teaching and training future social workers for 15 years, with a special focus on mental health treatment and violence intervention. Motivated by her own diagnosis, her public speaking, teaching, and research activities now often focus on: raising community awareness of the challenges of those facing life-limiting illness, improving communication between health care practitioners and their patients around these illnesses, and facilitating discussions about living life with intention and meaning regardless of health status. In her free time, she can be found making playlists of her favorite songs, spending time with her friends and family, or relaxing with her one-eyed pug mix, Kia.