Patient Spotlight: Celeste Olinger Denver, Colorado, USA
We interviewed long-term ALK survivor, Celeste Olinger, about her somewhat unusual cancer journey, her life, and her new normal since her diagnosis that still keeps her grounded and allows her to thrive.
1. Tell us a little about yourself, your personal and professional background, and your journey with ALK+ lung cancer since diagnosis.
Hello, my name is Celeste Olinger. I’m called Mom by two adult children and am known as Popsicle Grandma to four grandchildren, with a new little one on the way. I’m a 66-year-old native Coloradoan that lives in the Denver metropolitan area. In my professional career I was employed by federal, state and local levels of government serving as a Congressional Staff/Aide, Public Information Manager, and Director of Communications and Community Outreach. Prior to my lung cancer diagnosis, I commuted to work in Columbia, Maryland. It fit in well with my personal sense of travel, adventure, exploring areas, and experiencing different cultural offerings.
My experience with NSCLC started in November 2012, when I became ill. After visiting a local urgent care in Maryland I was diagnosed with pneumonia. During the office visit, my X-ray identified a circular spot on my lower left lung lobe. A CT scan was ordered and received as well as a referral to a local lung specialist to learn more about the suspicious spot.
My scheduled appointment with the lung specialist was uneventful as the noted lung spot was described as a nodule, probably remnants of pneumonia. Heightened concern was expressed of a smokey looking gas in my throat area identified as acid reflux. Recommendation was to follow up with a gastrointestinal specialist and I was given a prescription for a second CT scan. Both recommendations were performed as suggested followed by supplemental visits to a local primary care provider.
In August, at a regular appointment with my primary care physician, she inquired about the second CT scan. I mentioned that, although I hadn’t heard from the lung specialist, I was told upon calling their office that they couldn’t find my file, I was placed on hold and then I was told, “if something was wrong, most likely you would have heard from us.” At that point, the PCP asked if I’d agree to allow her to request and review the results. Unfortunately, she was not the ordering physician and could not obtain the results. Her office phoned and asked if I’d mind requesting and picking up the CT results and dropping them off at her office. The next day she called and said the CT results were abnormal, and I needed to see a different lung specialist. I scheduled a second opinion in October, with a biopsy performed in November. On December 3, 2013, I received a call from the second lung specialist informing me that the biopsied spot was adenocarcinoma NSCLC.
I underwent my first line treatment of a lobectomy in 2013. The discovery of spots on my pulmonary artery led to chemo and radiation, shortly followed by a recurrence that led to my introduction to my first TKI, Xalkori (Crizotinib). In 2019, the discovery of a brain tumor made way for brain surgery followed by treatment with a newer TKI, Brigatinib. I’ve been on Brigatinib ever since.
2. What do you know now that you wish you knew back when you were first diagnosed? What would you advise a new ALK patient?
Lessons learned since diagnosis or what I wish I knew back then are: First, if any physician/specialist does not follow up with ordered test results, you have the option to physically go and request your test results, imagery or medical records, and take reports elsewhere. Don’t be afraid to seek a second opinion. Don’t be afraid to advocate for yourself. Second, it’s very important to request comprehensive genomic testing of any biopsied tissue removed from your body. Don’t be afraid to ask with each recurrence either. Third, seek out and find your people, ALK family. Strip yourself of past inhibitions, share your true feelings and thoughts, and ask plenty of questions.
3. You are a long term ALK survivor. How have you seen ALK treatment change and how has this contributed to you developing a sense of hope for the future?
As a long-term survivor, going on 12 years from my December 2013 diagnosis, I remain grateful and hopeful. Physician dedication and compassion to the study of ALK has led to advances in medical research, study and the developmental science of TKI’s. We must not discredit the value of data compilation and scientific study as it can provide important informational trends and insights that are paramount to our livelihood. I started with Xalkori as my first TKI and experienced a lot of side effects. After switching to Brigatinib in 2019, the improvement in side effects and efficiency between the two TKI’s was measurable. Notably less swelling, fewer digestive issues and the added bonus of more energy. ALK patients like me depend on medical knowledge to predict, prevent, diagnose and treat this disease effectively through scientific research, development and progress. I would not be here today without the progress in the study of ALK and new TKI’s.
4. How do you stay grounded day to day and maintain a sense of optimism despite the uncertainty of living with this diagnosis? How do you care for your own mental and physical wellbeing in addition to other obligations such as assisting in the care of elderly parents?
The word “cancer” is overwhelming and scary. Dealing with and navigating a terminal health diagnosis feels odd and stays with you every day. My experiences, confidence, problem-solving, professional dreams were replaced with feelings of vulnerability, uncertainty, denial, anger, fear and even death. How do you balance life with death? Hmmm, never dealt with that before? Personally, I remain optimistic by reflecting upon one word, “grateful.” Identify and prioritize what’s truly important to your heart and soul. Encourage and cheer for yourself daily, weekly, or as needed. Weekly, I write positive thoughts in my bathroom mirror with lipstick and when I need a reminder, I go back and read it. Identify, what makes you smile? Surround yourself with positive people, pets, love, care, laughter and knowledge. I’ve mentioned previously in Death Cafe that since diagnosis I fictionally created my bus of life. Passengers on my bus rotate in and out - with the exception of my dog Riley who stays full time - and encompass a variety of doctors, specialists, my husband, my adult children, my Riley dog, grandchildren, parents, extended family, colleagues, friends and ALK groups/friends. Throughout my ride, passengers on the bus help me stay focused on the road during challenges, surgeries, and treatment. They help fight off the negative thoughts of doubt, fear, anxiety, and anger doled out by cancer gremlins and replace it with information, encouragement, courage, questions and answers. While driving the bus, I take deep breaths in to smell the roses and enjoy the scenery, then blow out all those cancer gremlins germs and thoughts while keeping the bus on the road. Since diagnosis, I’ve become more aware of the beauty of nature and the earth. It’s not unusual to see me stand barefoot, grounding the earth under my front tree, gazing into the night sky while asking the universe for yet another good brain MRI or to hear NED during test time.
I try to stay busy and as the daughter of 95-year-old parents, me and my four siblings rotate weekly in the everyday care for our parents. Time, love, memories, and smiles bring me comfort, and keep my mind off myself. Also, their care has given me insight into end-of-life needs. Caring for my parents often feels as though we are all walking each other home, we just don’t know when it will happen. In November, we said farewell to Mom. Now, I find myself holding on tight to Dad. However, with time comes the realization that none of us are here forever.
5. You attended our 2022 Summit in Denver and are also planning to attend this year’s Summit in San Diego. As a long-term survivor, what do you most look forward to when it comes to attending in person? What are the benefits of these events?
Attending the Denver Summit left me with a true feeling of self-care—it truly was an investment in myself. As I got in my car to leave the Summit, it felt as if I was leaving my extended family. The camaraderie in meeting and hearing other ALKies’ stories let me know, I was not alone. Learning and listening to medical experts filled me with energy, excitement, hope, and above all, made me feel as though my life mattered, unlike through my initial diagnosis. The ability to ask and talk face to face helped remove worry and killed the cancer gremlins.
Interview by: Christina Weber