I am Christina Donahue-Taylor. I’m 58 years old, and I live with my husband, Alan, and Lily, our lovable 7-year-old daschund-miniature pinscher mix. I enjoy going to the beach every summer, traveling overseas to Germany, where my roots are, and reading medical thrillers. I work for a research institution assigning Medicare codes to diagnoses and medical procedures conducted for clinical trials. Having been in this position for the last 9 years, I’ve read numerous medical records of patients with terminal diseases who have expressed hope that they will one day be recipients of the “miracle” cure. I’ve often thought that if I were in a similar situation, I’d hope I’d have the courage to enter a clinical trial to help find a cure, if not for me then for others like me. 

So begins my long journey on this unpredictable, chaotic road:  At age 51 and overweight most of my life, I had finally decided to get my health in order and pursue bariatric surgery. 2013 was going to be my year! I’d worked so hard the previous two years to prepare for the procedure and was so happy to be approved for it that I did not even think about getting a colonoscopy at the recommended age of 50. Losing weight was my goal at the time. My husband persuaded me to have the colonoscopy to “get it over with.” After the procedure, the doctor told us that the gastric bypass would have to wait as there was a more pressing issue: colon cancer. Strike 1. 

Surgery and chemotherapy were followed by successful recovery and to date I am in my sixth year of remission. During my colon cancer recovery, a few lung nodules were identified and, given my history of smoking, I entered the lung surveillance program with a CAT scan every six months. Over the next two years, the nodules waxed and waned and didn’t seem to be of interest to anyone but me. By 2016, I had read enough medical records to recognize that some of these cases sounded eerily like my own problem, and I demanded a biopsy. In April 2016 I received the diagnosis of Stage 2B adenocarcinoma, NSCLC[1]. Strike 2. 

At first, I was in disbelief. I heard only expressions of doubt that it could be cancer; comments such as “it didn’t present like lung cancer or look like anything we are used to seeing on scans” fed my disbelief. But, in June 2016, I had a right upper lobectomy, upgrading my stage to 3A, and then chemotherapy and radiation concurrently. This treatment plan was much more rigorous and taxing on me than the colon cancer treatment. I joined the online support group LUNGevity to talk to others who had been down this road and to seek support on how to get through this grueling treatment. I read many posts and posted in return. With the introduction of precision medicine, I started feeling more hope as I read more stories of other lung cancer “warriors.”  

Sadly, ironically, my younger brother James, who was also my best friend, was diagnosed with NSCLC Stage 3B in August 2017. He passed away in May 2018 from complications of sepsis. He had made me promise that I would take care of my health and try to kill this monster. His passing energized me to join forces with other LUNGevity participants to fight for a cure. I saw an advertisement on the LUNGevity website inviting applications for a Lung Cancer Research Program (LCRP) consumer reviewer. I had no idea what that was, but it piqued my interest. I communicated with Katie Brown of LUNGevity and applied. I was interviewed and was chosen to work on the project. I knew that I had promised my brother I would do whatever I could do to help myself and others. It was a very rewarding and honorable experience to be sitting at a table with physicians, researchers, and scientists discussing possible new studies that might be approved with funding by the LCRP. Hearing what we consumers have to say about what we think is important in a study made me realize that the scientific community respects and needs our input since we are the ones with all the experience of this terrible disease. The work that LCRP has been doing for several years continues to be engaging and impressive. Being a consumer reviewer provides the opportunity to meet other lung cancer warriors and share in their journey. I look forward to participating again this fall in another round of reviews.

All along my journey, I have been followed by my oncologist with the required lab work and scans, be it for colon cancer or lung cancer. In October 2018, I had been cancer-free for 2 years from lung and 6 years from colon. However, as every scan date approaches, the anxiety starts to creep in and we are reminded that there is no cure and that the sleeping monster could be awakened at any moment. In November 2018, I was told that my CEA[2] level was a bit elevated but not to worry as we would be repeating lab work in February 2019. My scans, however, were stable with nothing new. The lung nodules that were identified in 2013 were still there but without any changes. However, the February 2019 lab work and scans were done and did not show very favorable results. CEA was still creeping up and scans now showed a few lung nodules that had grown a couple of millimeters. Now the scan also identified a bone lesion at T9[3]. From all my record reviews, I had a feeling that it was probable bone metastasis with a lung cancer recurrence. Strike 3. 

I was devastated. I had been making plans to travel to Ireland in the fall to research my Donahue roots, things at my job were great, I had been losing some weight and was finally feeling comfortable in my skin after all these years. Now what?  

Thinking back to all the protocols I had reviewed with LCRP and all the new and upcoming clinical trials that were being talked about on the LUNGevity forums and at my research employer’s, I knew that this was not the end for me. I was not striking out. I sought a second opinion, had a lung biopsy done, next-generation genomic testing for mutations, and am now in the process of gathering information about possible clinical trials I could participate in.

There is hope for all of us. The Food and Drug Administration is approving medicines in a timelier manner for all types of cancer, and with the advancement of precision medicine, the cure for us could be right around the corner. Back to that question I posed earlier, “Now what?” Here’s what I say: Don’t give in to the monster. Keep advocating. And full speed ahead with my plans!

 

[1] Non-Small Cell Lung Carcinoma

[2] Carcinoembryonic Antigen

[3] The Ninth Thoracic Vertebra