*September 2024*
Stephanie D’Elia is a microbiologist with a passion for bacteria. She loves seeing how much bacteria will grow in test tubes or on petri dishes, and what those growths will look like. She also enjoys the colorful reactions that can occur in the test tubes because of the metabolism of bacteria and the contents of the tube. But Stephanie’s ability to work in the field changed in 2023, when she was diagnosed with Stage IV EGFR + lung cancer.
Stephanie had a primary tumor in the left lower lobe of her lung, and a metastasis to the brain (cerebellum). In the first step of Stephanie’s treatment, her larger brain metastasis was removed via craniotomy. Then, she began targeted therapy with Tagrisso (osimertinib). She also had three days of radiation to the surgical area of the brain and one fraction of radiation to a small brain metastasis that had appeared sometime between surgery and radiation mapping.
This year, Stephanie has had two progressions. The primary tumor, which initially had shrunk considerably, began to grow again. That was treated with IMRT radiation and shrank quite a bit. Then, recently, Stephanie had a few small brain metastases which were treated with SBRT radiation. At this point, Stephanie and her oncologist have decided to increase her Tagrisso dose.
Stephanie and her husband are very happy with their relationship with her neurosurgeon and with the Memorial Sloan Kettering (MSK) team. She feels the MSK team is very responsive to their needs via the patient portal or the after-hours triage phone line. “I feel very personally and directly cared for by my doctors and nurses,” Stephaine said. “No one ever takes a judgemental tone with me, even if I think my problem or symptom is small or insignificant. My concerns are always treated with importance and dignity.” The administrative team and billing offices also deal swiftly with the business end of things.
Stephanie manages life with cancer in many ways:
“I participate in multiple online groups such as Cancercare.org and some on Facebook. I participate in Integrative Medicine with my cancer center, Memorial Sloan Kettering. They offer Zoom classes for exercise, meditation, and music therapy. Music therapy is my favorite so I decided to sign up for individual music therapy as well. I also utilize talk therapy with Cancer Care.
“I try to get outside or at least open a window for fresh air as often as possible. I really enjoy my yard with our garden, birds, squirrels, and feral cats. I don’t like to sit still but I really enjoy going out and just weeding or moving around the decorative rocks.
“I am on disability and I really miss working. I find it difficult to find things to keep me occupied, especially if I am not feeling well and don’t have much energy. Sometimes I read scientific articles because I am a biologist. Sometimes I watch fictional TV or documentaries. The best thing for me to do to avoid being swallowed by fears and anxieties is to keep moving, even if it is very gentle movement like organizing a sock drawer or washing a few dishes. It is difficult to hope without getting sidetracked with things that need to be ‘dealt with first’. I love looking forward to the next home my husband and I will buy and live in with our two indoor cats, Allie and Anderson.”
Stephanie also takes information that she finds in support groups or internet searches and follows up on it using www.pubmed.gov to search for peer reviewed articles.
Added Stephanie, “The EGFR Resisters is very important to me. In the Facebook group, people share factual information and the latest research. That is what my type of brain needs to understand my disease and to make decisions. It also helps me feel less alone because other people have my same type of brain.”
When Stephanie realized she couldn’t work in her career anymore, she also saw that other things were more important. She said, “I realized that I was glad that I wouldn’t be going to work any longer because I was not treating myself very well physically or mentally at work. I decided that when I do go back to work, I will protect my mental and physical health better. I also realized that my life might be shorter than I expected it to be so I try to pay more attention to the most important people in my life.”
Then, when Stephanie saw she was going to be on disability and would have time, she decided to become an advocate for healthcare reform. “I have been trying to familiarize myself with social media platforms, laws and policies, and key ‘players,’ such as elected officials and Big Pharma. I am currently working on online engagement regarding the November elections. I have realized that the best path to healthcare reform is to encourage people to vote to protect their interests, not just for one high office of the land but for all candidates that will support the needs of disabled and sick people.”
Does Stephanie have advice for fellow survivors? “Advice needs to be very individualized. Sometimes the things a person needs to hear or deal with may be very ‘small’ or specific. In general I would encourage someone to be guided by their ‘inner compass’ and not to override feelings or instincts that they may have about their care or what is important.”
Because Stephanie doesn’t work at this time, she tries to apply that same curiosity to her everyday life. She tries to learn about anything that seems interesting. She subscribes to National Geographic magazine online and some news outlets to find out what is new. She says, “I also happily observe the biology in my yard as the plants grow throughout the season and the compost is decayed by the microscopic organisms. (That is if the yard cats don’t get the compost first!).”
