Years ago, I got a tattoo on my foot that says “Never say never.” The “V’s” are ribbons: one ribbon is pink for breast cancer, for the many friends I supported who faced the disease, and the other is green for organ, tissue, & eye donation, which is my career. Today, I look at those words and ribbons and realize how little I knew about lung cancer at the time. I would never have thought I would ever say the words I have lung cancer.
I was diagnosed December 26th 2019 with stage IV lung cancer. Merry Christmas to me! There were very few symptoms besides a cough, which I attributed to a cold I must’ve caught from my son, who had been sick all fall.
I had a chest x-ray, and they found a nodule, but I wasn’t concerned; they are common in the Midwest. I took antibiotics and was still coughing, but again, I wasn’t concerned; it took my son a while to get over his cough too. They performed another chest x-ray and the nodule was still there. We decided to do a CT scan, just to be safe, but I was confident it was nothing.
Less than two hours after my scan, the doctor’s office called me, asking me to come in to review the results. I knew right away something was wrong; doctors don’t ask to see you urgently with good news. When I got there, the doctor was beside himself; he told me I had lung cancer.
I was shocked. After the appointment, I went outside on my deck and cried and screamed.
NEVER google “lung cancer survival rates.” The statistics are pretty harrowing. While you want to beat the odds, you feel like there isn’t much you can do other than follow your physician’s recommendations. People always say “keep fighting, we are fighting with you,” but in reality, my fight is all based on how well my drugs work or do not work. I don’t really feel like I have control over the results. I want to punch the cancer in the face and step on it, but unfortunately, that is not an option.
I call my cancer “vanilla cancer” because I don’t have mutations or PD-L1; I just have plain old cancer. I was put on an immunotherapy and chemo combination. I did not lose my hair, but did gain 25 pounds and was thrown into menopause. People often tell me I don’t look sick or look like a cancer patient. I’m not sure what that means, or what they are hoping I say back.
Overall, I feel okay. The weeks I have chemo, I get nauseous, achy, and just general malaise. The next week, though, I improve, and by the third week, I feel good. I can still do most of the things I did before, but everything takes additional time due to the fatigue. Cancer makes me tired, but the drugs exasperate it. People tell me to sleep, but it’s not the type of fatigue that sleep helps; it’s more like your body is just too heavy. Every activity wears you out.
I didn’t want to accept it, but a group I worked with purchased several months of house cleaning service. It helped so much that I continue to pay for them to come now. It gives me the extra time to spend with my grandkids, kids, or do something I would enjoy, like cook a meal, rather than spend the time vacuuming and cleaning bathrooms, which leaves me more tired and less likely to have time to spend with my family.
The biggest change for me after my diagnosis was my loss of independence. All of a sudden, my life was changing; I was going to doctors’ appointments and taking drugs that didn’t make me feel good. While adjusting to that new lifestyle, the COVID-19 pandemic began. Now, I don’t leave the house very much unless someone is with me. My husband always goes with me so he can be the one taking the risk by touching the cart or going through the checkout line.
It’s a balancing act between making the most of life and staying safe. I’m usually a very social, outgoing person, but my cancer and the pandemic made it so I no longer went anywhere. I missed family events, friends’ wedding, and just simply socializing. There’s a fear of getting any type of infection, let alone COVID-19. So even though I want to live life to the fullest and make quality memories, I know I could be putting myself at risk if I do.
When I was diagnosed, I had no idea what to ask or who to turn to. Luckily, my doctor gave me websites to look at and that’s how I found LUNGevity. LUNGevity had resources to help me understand different types of lung cancer and treatment options; this was not the sort of information my doctor sat down and explained to me.
I started attending the Virtual Meetups; they are phenomenal. There are so many people in these groups that have been survivors much longer than I have. If you are newly diagnosed, I would recommend trying to find another person living with the disease. Other survivors can be an awesome resource to connect you to information, services, support groups, and community, all of which is so helpful when navigating this disease. Everyone’s stories are a little different, but you can get basic knowledge, ideas of questions to ask, and hope – stage IV doesn’t mean you only have a few months left.
I still don’t feel like I’m at ease or acceptance with my cancer, but I feel like I better understand it and see a path forward. When I was diagnosed, I kept thinking there had to be a purpose. As I’ve navigated through this disease, I have realized there are a lot misconceptions and a lack of information out there about lung cancer. Now, I know my purpose is to spread awareness about lung cancer, help end the stigma around the disease, and advocate for more funding for research. This purpose helps give me control and focus on something beyond the disease itself.
I’ve always wanted to live to be 100 years old. My doctor always tells me: “We’ll get you 50 more years.” When I talk to other survivors, particularly the ones who have been surviving for several years, even before genetic markers were discovered, it gives me hope that my doctor is right, and that I will have many years of quality life with friends and family ahead of me.
Related Reading:
- The Importance of Community for Lung Cancer Survivors
- Palliative Care: An Important Tool for Advanced-Stage Lung Cancer Patients
- Your Best Advocate is You
Lisa Bistline works as a Communication Center Manager at Iowa Donor Network. Prior to IDN, Lisa was a paramedic and involved with paid and volunteer EMS services. Lisa enjoys spending time with her family, especially her two granddaughters; time spent snuggling or playing in the sandbox with them is time well spent. Lisa also enjoys their "Happy Place," a home at the Lake of the Ozarks where everyone is welcome and swimming, floating, boating as well as lounge time on the deck with your favorite drink is required.