Little did I know that the pain I was feeling in my right shoulder would be the start of my cancer journey but that is how it all started. For months I had put up with the nagging pain that occurred in my shoulder. I attributed it to exercise and the strain I was putting on it. The pain continued to worsen over time and then became excruciating when I laid down. I decided it was time to investigate further.
My journey starts there. After a few MRIs and a CT scan, I was told I had fluid on my lungs. I was scheduled for thoracic surgery to drain the fluid from my lungs and to find out why the fluid was accumulating. During this surgery a cancerous mass was found, and I was diagnosed with stage 4 NSCLC caused by the A.L.K. gene mutation. I was unaware of this type of lung cancer caused by a gene mutation, and I did not know what that meant for me.
I have since learned that this type of cancer makes up about 2-5% of all lung cancer patients. Most are nonsmokers or light smokers between the ages of 30 and 60. However, I have learned about survivors that are as young as 17. This type of lung cancer is rare but the good news is that it can be treated by targeted therapy.
I was diagnosed in March, 2017 at the age of 50. This diagnosis came as a complete surprise to me and my family. “How can this be?” is what kept going through my mind. I led a healthy lifestyle but learned that cancer can happen to anyone. My family and I are adjusting to our new "normal". We have good days and bad days. I have learned to fully embrace life but I would be lying if I didn't say that I have days when I feel sorry for myself. During these difficult times, I try to focus on all the good things such as I am still living, thriving in fact, and I am very hopeful. I am currently taking my first targeted therapy medication. I am feeling well, back to working full time and I remain optimistic. However, I know that at some point the cancer will get smart and learn how to get around this treatment. I will need to move on to another option but eventually my options will run out.
Cancer takes away a lot from its patients and leaves you feeling very helpless. I can't do anything to control the cancer but I can share my story to make others aware that lung cancer can affect anyone. If you have lungs, you can get lung cancer. I have been a supporter of the American Lung Association for some time. So many people are affected by lung disease. It not only affects the patients but their families too. We need to get more people educated on lung diseases. I feel it's important to support funding research and treatment as well as educational materials. We are stronger together.
Margo's journey began with Thanksgiving day 2015. Later that day she began experiencing difficulty breathing so she went to the hospital to have her injury assessed. The x-ray showed that she had two fractured ribs, and it also revealed nodules presenting in both lungs. A series of tests were scheduled immediately and a pet scan to rule out CA. Upon completion of her tests no evidence of CA noted. She was asked to return in three months for follow-up. Surprisingly, her follow-up retake of all tests presented with noted changes on one of the nodules. Numerous biopsies were performed and she met with the oncologist post testing and was informed she had small cell lung cancer stage 4 incurable. Margo was mesmerized, asymptomatic, and wondering how could this be.
Her profession is nursing and unequivocally promotes the importance of second opinion, and adamantly advocates for all patients to exercise their right with any disease state of concern. She sought a second opinion at Froedtert Hospital and underwent all testing once again to accommodate the new medical team. Margo felt it was of paramount importance to do this starting fresh and not relying on the previous medical reports provided from another facility. She had to complete her MRI and she did and as she was driving the oncologist called from Froedtert and asked if she could come in. Upon meeting her new oncologist she walked in and said "There is no cancer of the brain." While that was great news for Margo and she's feeling ecstatic, her new team used the term "baffled" due to distinctive features of her disease. Again, continued to be asymptomatic, vital signs within normal limits PFT 100% but "baffled" because all lymph node biopsies were negative. Nevertheless, biopsies of the lung tests confirmed presence of the nodules diagnosis small cell lung cancer stage 4, incurable and adenocarcinoma. Right lung small cell and adenocarcinoma tumors; left lung adenocarcinoma tumor. So the plan was to have a surgical procedure in June, taking a frozen section of the right axilla lymph node if metastatic, no removal of tumors if benign, removal of right lung tumors. The left lung tumor no change not life threatening at this time will monitor. Both tumors in the right lung were removed frozen section lymph nodes negative team baffled again. The oncologist arranged for chemotherapy aggressively every 21 days times three days; one day eight hours, two days two-hour session. Follow up every three months for approximately 10 months with pet and CT scan.
Her first follow up came back negative first remission, and immediately Margo began volunteering in her chemo unit where she received her treatment at Froedtert. She says it is the best day of her week being able to help motivate other patients, lifting up their spirits with encouragement, empowerment, love, and compassion. She expressed disappointment for lack of physical support groups for lung cancer patients only the internet, or via phone. Once an organization told her "there are no survivors" to which she answered "well who am I and lung cancer patients lives matter too." Undeterred, Margo continues to share her inspiration. She says, "Survivors need a voice to help others to get where we are." She also suggests that a positive disposition can carry you over mountains no matter how difficult it may seem. Margo feels very strongly about finding Faith-Based Resources to help you with your journey so you can get through the process more easily with peace and joy and learn to be your own advocate first and foremost. She described a fellow lung cancer patient who was consistently afraid, but was comforted when Margo explained to her faith and fear cannot live in the same household. The patient mailed a thank you card to her at the chemo unit. The patient is now in remission. Margo also advocates for healthcare changes and social security reform. She discussed her own personal frustrations with the existing systems, the mayor, alderman, state representative, and senator.
Throughout her diagnosis and treatment, Margo wondered how she was taking this news so well she asked her pastor "Why am I not breaking down?" And he replied, "Because you know your God." This strong level of faith is abundant in Margo's story and is a source of hope and confidence as she continues this journey. She says "God is using me His vessel to be able to go out and be persistent in sharing my story, be an advocate for second opinions, to educate, to provide awareness, to volunteer, and most important to know God is The Great Physician and only He knows the hour and the day. And if you believe you can conquer. There is a God and He can help you and He wants to help you. Hope is Alive!! To God Be The Glory!!"
Margo is currently in remission and her chemo port has been removed. She has not renewed her nursing licensure. " I only want to be a Lung Cancer Survivor Advocate sharing my testimony giving God all the Glory due Him."
LUNG FORCE Heroes are patients, caregivers, family, friends and co-workers of those who are impacted by lung cancer. Our Heroes share their powerful journeys — stories which help educate the public about what it's like to have lung cancer or lung disease. Heroes may also be asked to speak at a LUNG FORCE Walk Kick off event, Corporate Recruitment event and/or on Walk day.
If you're interested in becoming a LUNG FORCE Hero, please contact Lizzie Covington for more information. We also invite you to Share Your Voice and read about other Heroes' experiences too. Everyone's story is unique, and we appreciate you getting involved and becoming a LUNG FORCE Hero!